Click Here to Read Brady's Story
Sunday, May 22, 2016
Hello world!!!! It's been way too long since we posted here, so I decided it's time! Everything looks different so bare with me. Hopefully I can figure out how to add pics and if I'm real lucky, even videos.
Mr. Brady is doing amazing! He had is 14th birthday yesterday! I can't even believe it. I swear he is growing up so fast. He has grown into a little man right before my eyes. Things are going so well here. He has been seizure free since his last coma in 2011. Never dreamed we would get to this point but feel so incredibly lucky and blessed that we are. He is almost down to only one seizure med and ao far doing well. His speech is coming right along, as is overall communication.
He tries hard to mimic some words and even phrases. He uses his iPad to talk to us and cracks us up with the things he says sometimes. I swear this kid was meant to be a comedian, lol. Yesterday I woke up singing happy birthday to him and all day I would say "hey it's your birthday" he would just laugh and shake his head yes. Last night I heard his iPad singing happy birthday and he had gone to YouTube to find random birthday videos...he's so darn smart!
A little while ago we were discussing having breakfast for supper. We said maybe we should just go to Huddle House.  Brady got on his iPad and said "I want to go" "I want" "pancakes" "French fries".
He is seriously amazing and rocking life.
Next month we get to fly back to Boston for a checkup with our favorite Angelman Doctor. Super excited to show off Brady's progress :) I will do my best to post lots of pics of our trip.
Anyway, time for me to get this sweet boy to bed. Keep dreaming! Never lose hope guys. Brady is kicking serious Angelman butt and proving those professionals wrong every day.
Don't forget to check out www.cureangwlman.org to read about the latest research and upcoming trials. So many promising things are coming in the near future for our kiddos.
In the meantime keep living life to the fullest and enjoy every second. Life has its up and downs but it's truly a beautiful thing.
Peace out till next time ;)

posted by angelwings @ 9:22 PM
   1 comments
Tuesday, March 24, 2015
 
Okay, so I often hear the phrase "I hate Angelman Syndrome"...I have mixed emotions about how I feel when I hear or read this statement. Angelman Syndrome is not who my child is but it is a big part. 
He is this handsome, stubborn, strong-willed, happy, quirky, silly little boy. He can be a bit rebellious like any preteen and I don't believe any of this comes from AS...this is who he would have been with or without this disorder. 
I don't like many of the things that AS does to him or prevents him from doing. It breaks my heart when he knows what he wants and he can't tell us. It makes me sad when he so obviously wants to play with other boys his age, but he just doesn't know how. I can't stand seeing him in pain or discomfort but not being able to figure out what is causing it. I couldn't help but to silently curse AS all the times when we have come so close to losing him or when we sat praying by his bed through two comas. 
I don't say that I hate AS but I do say that I strongly dislike certain aspects of it. It is not always fun and giggles, it is a serious disorder that causes our children and parents a lot of heartache at times...sometimes we even lose children to AS. 
Despite the heartaches, we do still feel blessed. Because of Angelman Syndrome, Brady has taught us the meaning of life. He has taught us to cherish and take advantage of each day together...not to depend on having another chance tomorrow, next week, or next month. Not only has he touched our lives in a way that I never dreamed possible, he touches the lives of everyone that he meets. Just seeing him enter a room and light it up with that silly little giggle, his bright smile, and blowing kisses, is a reminder of God's plan for him. We have also had the opportunity to make connections with people who we would have never known existed before. Some of my best friends are AS parents.  Many of us share different beliefs and we come from different geographical locations. We may have different backgrounds, some may be younger and some are older, we may even have different religious beliefs, some are wealthy and some not so much, but we are connected and forever bonded because of our children. We respect each other's differences and support each other no matter what...this wouldn't have happened without AS. I do believe that everything happens for a reason and everyday I am reminded of why AS came into our lives. We will continue to learn and grow, even when it is cured.
People often ask me how I do it, how I stay so positive with all that goes on in our lives because of AS...the truth is, I'm just so thankful to have Brady here making messes, yelling/demanding mashed potatoes, throwing rolls of toilet paper in my bath water, and even putting my phones in the sink. Life would be so much worse and maybe even sometimes boring  if he were not in it. So I can take anything this kiddo throws at me, as long as we can go through it together as a complete family. I laugh when others would cry because laughter is the best medicine :)
Last night I lay in bed thinking about all that we've been through with this sweet boy. I thought about all of the naughty things that he does and how I couldn't imagine life any other way. When he spends an hour visiting maw maw, the house is awkwardly quiet. When he's in a coma or having non stop seizures, we long to have him home getting into everything...chaos is our normal and we crave it. Do we want a cure for AS...YES! 
We don't want a cure because of our own selfish reasons because we think that this kid is simply awesome. We do want to make his life a bit easier with less pain and suffering and less frustration.  Our reasons may be somewhat different than those of a typical parent but in the end don't we all just want to enhance and improve our children's lives? Don't we want to take their pain away and make things just a bit easier for them? 
So back to my original point, I'm not sure if I actually hate AS but I do know that I strongly dislike certain aspects of it. I think that's it's totally ok for anyone to feel how they feel about it. I don't fault anyone who says they hate it. We AS parents all go through many of the same challenges but at the same time some have been at it a lot longer and are a bit more tired. Some have faced dangerous, potentially life-threatening situations and some haven't. Some have spent many many days and nights in hospitals and some haven't. So while our situations are similar, they are unique, and we can't fault anyone for their feelings or thoughts
Anyway have a blessed night and don't forget to pray for all of those special needs families out there ;). I love you Craig, Peyton, and Brady...you are my rock.

posted by angelwings @ 12:38 AM
   1 comments
Sunday, January 25, 2015
To all the educators of siblings to special needs children...


So I was just reading an interesting article, and it made me think about all those typical siblings out there. How many typical kids in your school or in your classroom, have a sibling who has special needs? Are the teachers aware of these special circumstances? Are the students aware?
Our oldest son is no longer in public school, as he is now homeschooled. Because of circumstances beyond our control, homeschooling turned out to be the most suitable option; however, this is not an option for many. After reading this article, I really bagan to think about how difficult it must be for typical siblings in school, when there is so much going on behind the scenes. 
When my son told his teacher that his little brother ripped up or ate his homework, he wasn't kidding. Yes, it's a child's responsibility to keep up with their homework, but most kids don't encounter the tenacious, sometimes destructive behaviors,or  flash-like super human speed, that a special needs child can sometimes display. 
How often do children get to tell their teachers that their little brother has kept them up for nearly 30 straight hours, and that's why they can't concentrate or keep falling asleep in class? This used to be a common occurrence in our lives. 
What about those times when little brother is hospitalized or even in a coma, but big brother has to go to school anyway? There are just times that mom and dad have to pick and choose which days are most important for big brother to miss. But just because big brother is present and accounted for at school, it doesn't really mean that he is there. It breaks my heart to think about how hard it must have been all those times for him to concentrate, knowing what was going on with his family. 
Let's talk about those times when you board a plane and fly to a different state to get medical care for little brother...is it fair to expect big brother to stay 1300 miles back home? How can you teach family unity if you don't include the whole family in every aspect of life? Or how about those times that big brother is late because little brother needed changing at the last minute, had a medical emergency, or had a tantrum and wouldn't get into the car? Yeah it's a lot to think about and you become the queen of prioritizing when it comes to balancing the life of a typical child on one side of the scale and the life of a child with special needs on the other.
Next, how about the enormous amount of time that it takes to care for little brother? Oftentimes, the typical sibling learns to fend for himself. It's not that he/she is loved any less but they often get tired of waiting for their turn, so they just do for themselves. Sometimes, no matter how hard, we as parents try, we just can't control everything. There are days that I wish I could clone myself.
Don't  misunderstand what I am saying. I love our life and I love our family. After 12yrs, this is totally normal to us...we just think everyone else's lives are the abnormal ones 😜. But there comes a time when siblings just need/deserve  a little extra attention. There will be days when school is harder for them, than it is for most of their friends in their class.
 Will you be the teacher who knows and understands your students needs or will you be the one to ignore that child in need? An extra hug, a pat on the back, or simply understanding the need and accommodating for that day, just may make a difference in that child's life. 
Teachers are educated in many areas but this seems to be an area that is severely lacking in many cases. 
Again, I'm not complaining. I have two amazing boys. My oldest son loves his little brother, despite some of his quirky ways, lol. He has grown in so many ways and I know that this experience has shaped him into a more compassionate well-rounded individual. In a sense, I have two uniquely, special boys, whom I love dearly. I'm just saying that sometimes we can't control life and we have to accommodate for that, based on one's unique situation. The life of a sibling to a special needs child,comes with unique challenges, as well as, unique joys. It's difficult for those who haven't experienced it, to fully understand...but just make an effort. You could change a child's life.
Anyway, stepping down off my soap box and handing the mic off to someone. Time for this old lady to get some sleep! 

posted by angelwings @ 3:47 AM
   0 comments
Sunday, January 11, 2015




posted by angelwings @ 12:58 AM
   0 comments
I CAN (Cure Angelman's Now)!
So my fiend Lisa Kness contacted me with this awesome idea for raising awareness and funds for Angelman Syndrome. She is taking part in a race and has decided that their theme will be "I CAN (Cure Angelman's Now)". The hope is that this turn into a nationwide event for International Angelman Syndrome Day (IAD) on Feb 15th. She has also decided to donate on behalf of her very special little friend Brady.
We met Mrs. Lisa just after our son Brady was diagnosed with Angelman Syndrome...we were blessed to have her as his Speech Therapist. We were reeling from the life changing news and she became a fresh breath if sir for us. She fought a difficult battle of teaching Brady how to communicate, as well as teaching me how to help him with communication at home.  During the time that she worked with us, Brady was dealing with terrible seizures, that really knocked him back every time we learned something new; however, she never gave up on Brady. 
She believed in him and pushed him to do what she always knew he could. We learned a lot about communication from Mrs. Lisa but most importantly, she taught us to never give up hope and to always believe in our boy....never to sell him short. We became close friends through the years and even though she is in Alaska, while I'm in Alabama, she is one of our biggest supports and dearest friends. 

Angelman Syndrome (often abbreviated AS) is a severe neurological disorder characterized by profound developmental delays, problems with motor coordination (ataxia) and balance, and epilepsy. Individuals with AS do not develop functional speech. The seizure disorder in individuals with Angelman Syndrome can be difficult to treat. Feeding disorders in infancy are common, and some persist throughout childhood. Sleeping difficulties are commonly noted in individuals with Angelman Syndrome. AS affects all races and both genders equally.

Individuals with Angelman Syndrome tend to have a happy demeanor, characterized by frequent laughing, smiling and excitability. Many individuals with Angelman Syndrome are attracted to water and take great pleasure in activities like swimming and bathing. 

People living with AS require life-long care, intense therapies to help develop functional skills and improve their quality of life, and close medical supervision often involving multiple medical interventions. Angelman Syndrome may be misdiagnosed since other syndromes have similar characteristics. 

Angelman Syndrome is a genetic-based disorder resulting from the loss of function of the Ube3a gene in the brain. Loss of Ube3a prevents neurons from functioning correctly, leading to deficits in learning and memory. Importantly, loss of UBE3A does not appear to affect neuronal development, indicating that neurons could function normally if UBE3A function is restored. This syndrome HAS been cured in a mouse model and we have potential treatments waiting to go to clinical trials...we just need funding to get us there. 

To learn more about  Angelman Syndrome or to donate, please go to Foundation for Angelman Syndrome (F.A.S.T.) Therapeutics at www.CureAngelman.org We support these guys because they are nonprofit and 100% of funds go straight to research for those with Angelman Syndrome. 

Also, to learn more about Mr. Brady, you can go to www.sweetsweetangels.blogspot.com 

Thank you all for your support! #cureangelman 

posted by angelwings @ 12:55 AM
   1 comments
Saturday, December 13, 2014
Eegs before and after mino.
These need no explanation :) 


posted by angelwings @ 9:47 AM
   0 comments
Friday, December 12, 2014
Minocycline results are out!
Well it's been a while since we posted but we have news! Many of you may remember that, in 2012, Brady took part in a clinical trial for a potential treatment for Angelman Syndrome. The medication was an antibiotic called minocycline. We have been fairly quiet while we anxiously awaited the results to be published....now they have been published and we can speak freely about our experience.

So let me backtrack a bit before we I begin to share our experience. Brady has struggled with seizures since 8mths of age. He is well known in the community because of the severity of his seizures....but I like to think that maybe it's in part due to him being a cutie; however,  I am a bit partial :) Anyway, in 2009 he was placed in a coma due to seizures and again in 2011 he was placed in another coma, also due to seizures. We had gone through some pretty dark days by the time the trial was announced and we were able to apply.

During his last coma, we were all voting to win money from an amazing company called Vivint. I sat by my sweet boy's hospital bed and voted faithfully every day. I begged our friends and family to vote and most did. You see, we were experiencing something that many of our families have or will experience, so we knew all to well the significance of winning this money for our clinical trial. It was a surreal experience, to say the least. Our community rallied around us and many dedicated their daily votes to Brady. Guess what...we WON that money! Brady recovered from his medical crisis and we signed up for that trial at the first of 2012.

When we found out that he had been selected, I literally cried. It was like the stars had aligned and I knew that he was meant to do this. Nothing happens by coincidence. Even if we don't
 always understand or realize it, God has a plan for each and every one of us. Brady was in that coma July 2011, and had fully recovered by the time the trial selection started. He was chosen and we were one of the first to head to Tampa to a clinical trial for a potential Angelman treatment.

So in a few months we headed to Tampa to start this medication. We had no expectations but hoped for the best. We gave the first dose two days before we left Tampa. The first thing we noticed was when we stopped at a store on the way home, Brady held my hand as I walked to the cashier and asked for a price. She flipped the toy over, told me the price, and I took it back to the shelf. In a few minutes Brady let go of my hand, grabbed a toy and took off to the cashier. I followed behind him wondering what he was up to and to my surprise he handed the cashier the toy. She looked at me like "what does he want" I said "ummm, he wants it know the price", lol. She told him the price then handed it back to him. He was perfectly content and took the toy back to the shelf.

Then in the way home, Brady was happy and didn't fuss...this is not normal. He has always screamed when we went in long trips. Heck he screamed for the 7hr drive to get to Tampa. But our ride home was different. We tried to dismiss this as a coincidence because there was no way that we could possibly be seeing changes after only a few doses. Needless to say, it was a very happy ride home :)

So as the 8 weeks rocked on, we began to hear more vocalizations, he began repeating some words that we asked him to repeat, he began following simple commands, he started showing an interest in the iPad, finding his favorite movies on Netflix and actually watching them and seemed to just be more aware of his surroundings. The biggest thing was that our boy who had spent much of his life wining and fussing for hours at the time, hitting, pinching, and pulling hair, had begun
 to mellow out. There were too just many coincidences to continue to consider them all coincidence.

His behaviors began to disappear and a ray of sunshine began to peak through the clouds.
Before the trial, people used to say "my child is perfect the way he or she is" or "I don't want to
change who they are" well let me tell you, a fussy boy who was unhappy in his own skin, is NOT who my boy truly is. He was not that "happy Angel" that some got to take comfort in. I heard people say, well at least our kids are happy, but Brady wasn't. To date, Brady is a beautiful happy boy. He is stubborn like any 12yr old boy but mino has allowed his personality to shine. He is silly, sassy, and  entertaining like his mommy and bullheaded like his daddy, haha.

His communication is amazing and we have gone from 10 words pre-mino to currently 26 words. Did I mention that he has been seizure free for three years, aside from two little absent seizures? Also, did I mention that he now has a normal EEG? I will post pics of before and after EEGs and you can decide for yourself if there is a change.  I don't know why mino has worked so well for Brady but I just know that it has changed our lives. Maybe it's a combination of finally having seizure control, which I attribute to mino. Maybe the VNS (device implanted for seizures)plays a part in it. Maybe it's all of the above, I really don't care...I'm just happy to be where we are now. 

I also wanted to mention that we have been able to eliminate one seizure med and are now only on two meds. Our VNS settings are also much lower than ever before. Do I think mino is a cure, absolutely not. Do I believe that mino will allow us to eliminate all seizure meds, no. Do I believe in my heart that mino will be a treatment for some, absolutely. Again, it's not just about what all it has done for Brady but, if I were going to really  believe in a cure/treatment, I needed proof that AS could be changed, and mino has given us that. 

It may not work the same for everyone but we can all take comfort in knowing that AS can actually be altered. Years ago when Brady was diagnosed, they said do therapies, work with him at home, but for the most part just take him home and love him....AS will never be treated, let alone cured. I say to those "professionals" may you choke on your words, ha! Foundation for Angelman Syndrome Therapeutics has given us hope. This organization does not mess around :) They are already gearing up for the next clinical trial, which could be even bigger than the mino trial. To learn more, visit www.CureAngelman.org

So in summary, these are the changes that we have seen since beginning mino: improved cognition, major behavior improvements, more vocalizations, improved communication, overall awareness,seizure control, improved focus/concentration.

Would I recommend mino to anyone? Absolutely, 50mgsx2! Feel free to shoot me a message or email if you would like to know more or I can answer any questions. I can only share our experience, so I'm sure that some were not as positive as ours. For the most part, I do know that it was pretty successful. Here are the results if anyone wants to check them out ;)
http://www.biomedcentral.com/1471-2377/14/232/abstract 

posted by angelwings @ 11:00 PM
   4 comments
Wednesday, July 30, 2014
Brady riding the jetski
http://youtu.be/QthDP3UI5Q8

posted by angelwings @ 2:14 AM
   0 comments
Chatting in the car
http://youtu.be/os2VhnWckOk

posted by angelwings @ 2:10 AM
   0 comments
Brady chatting in bed
http://youtu.be/2aCCIE1XcaY

posted by angelwings @ 2:03 AM
   0 comments
Feeding himself salad
http://youtu.be/-MoLN2uYfEU


posted by angelwings @ 1:57 AM
   0 comments
Celebrating 3yrs of no seizures
http://youtu.be/8-GDmyavLDA


posted by angelwings @ 1:53 AM
   0 comments
Tuesday, July 15, 2014




posted by angelwings @ 12:37 AM
   0 comments
Saturday, July 12, 2014
Part 1 of July 11, 2011
So July 11th was a very memorable day for us, with lots of reasons to celebrate life. Three years ago, a nightmare was beginning for our family. I called my husband at work because I just had a bad feeling that something was about to happen to Brady. 
When I called him, I simply said "something isn't right with Brady, please come home and let's take him to the doc". He knows that I never ask him to do this and there have been few times, even during seizures, that I have asked him to come home. He didn't question me but jumped in his truck and headed straight home.
I called the ped and said "something isn't right with Brady, can you please see him". When they asked what his symptoms were, I said he doesn't really have any symptoms, I just know. Of course they told me to bring him straight in. Halfway in to a 10 minute drive to the doc, Brady had his first of many seizures to come, in the backseat of the car. By the time we walked in to the doc, he had another...eventually he was having them about every 30 seconds. Quite honestly, it looked like a scene from the exorcist. His head would drop, then it would turn, what felt like, all the way around, then he would jerk and drop again.  I've seen a lot of seizures but never this many at once and of course I always feel totally helpless. 
The doc and nurse stayed with us in the back room and got on the phone with the neuro, they knew we were coming but now to decide whether to let us make the 1.5hr drive to the hospital in Fl, or to wait for the ambulance to take him. We decided that we could get there faster so we ended up driving like a fine truck to a fire. We gave diastat and I'm in the backseat swiping his VNS every little bit, but nothing is working. 
I remember so clearly as we drove past the last turn to our hospital, having a brief discussion about whether to turn or try to make it to the hospital that would certainly have the best chance at helping us. In this situation, time was critical and we knew that he would have to be flown out anyway...we just wanted to get him to the people who could help him, ASAP. We drove and between VNS swipes, I quickly jumped on FB to beg everyone to please for my baby. I knew that we needed all the prayers we could get and FB was the fastest way to get the word out. We were terrified and or suing so hard that we were not about to lose our sweet boy. 
We finally got to the hospital and they worked on Brady for a while in the ER. They did finally stop the convulsions, but we hung around for a few days just to make sure they didn't come back. We came home for the weekend and at first we just thought he was tired from the whole ordeal, but by the end of the weekend, I had that sinking feeling in the pit of my stomach that something was really very wrong with my baby. I called our neuro and he said to come straight in for an EEG (thank God he is amazing and he really trusts my instincts). 
We did the EEG and I remember our doc walking by the room...I kept thinking oh this can't be good at all. I mean he came down from the third floor just to see Brady's EEG....that's not usually a good sign. Then I remember seeing his partner and several other docs in the office, going to the back room where our doc was looking at the EEG. See, we had been through something similar nearly two years prior, we knew that Brady was in what they call Non Convulsive Status (the brain is constant toy seizing but you can't visibly see the seizures. He had been put into a coma for this before.
The doc came in after a little while and sat down on the bed. I remember the look on his face like it was yesterday....we knew it was bad. He said "he's in status again. I don't have any more tricks up my sleeve and we need an outside consult. We will out him into a coma tonight and fly him to a specialist". We had to make a decision on where to go...Miami and Birmingham were on the table. We were taken by ambulance over to the hospital where Brady was put into a coma. The following day the jet arrived at the airport and they came to get Brady. There wasn't enough time for me to get clearance to fly with him, so we had to make the 4hr drive while he flew. Some of our dear friends were there with us and the mom stayed to see us off, but the dad drove behind the ambulance to the airport and stayed with Brady until he was put on the plane. 
We jumped in the car and drove as fast as we could to be with him in Birmingahm. Because he would get there three hours before us, another dear friend in Birmingham, met him at the hospital ans sat with him until we could get there. I remember tracking Brady's flight on my phone and watching to see just where he was nearly very minute. I have rarely been away from him and now he was in a coma on a jet...it's nearly too much for one person to swallow. 
We finally got there and he already had two personal nurses sitting by his bed, monitoring everything.  We spent many days there, watching the EEG, praying for it to get better. He would go in and out of status and sometimes it felt hopeless. Theme mount of meds they they had to give him was unbelievable. 
During that time, our friend who had met him there, would come and take the 10pm visiting shift so that we could get a little sleep. We also had another friend bring a special stuffed dog that had been anointed and prayed over. A nice man heard our story and brought a cross, which we kept under Brady's pillow. Some people upstairs, from our hometown, heard our story and send down a homemade card. People on FB began to change their profile pics to Brady and constantly ask for prayers for him. We got pics of runners around the world, holding signs with Brady's name. The outpouring of love and support was amazing. We were even getting phone calls from all over the world. 
My baby was laying there, face swollen, hands swollen, feet swollen, and constantly going choked and needing to be suctioned out. The vent is not a pleasant thing to watch and it is not for saying who has a weak stomach. The EEG leads on his head were making sores. He had a PIC line going into his heart and numerous other wires and devices hooked up. But in all this, we were able to find some peace. We knew that God was answering prayers as thousands of prayers were going up daily for him. Finally, after several days, the EEG began to improve. 


posted by angelwings @ 2:14 AM
   0 comments
Part 2 of July 11 2011
We went to the hotel to catch a few hours of sleep, as they wouldn't let us stay with him. We were only allowed in during visiting hours and oftentimes our visitation time was taken away because of a crisis with another patient in there. When we left late that night, Brady was out of status but he had gone out and went back in many times before, so we didn't know what we would find in a few hours. When we did return and they let us in, they had already removed his vent tube. Yes, normally this is a happy moment and all is right in the world, but not for our us :(
Brady was struggling to breathe. The nurses and docs were huddled around him, baffled as to what was going on. They mentioned putting the tube back but we shuttered at the thought of that. They thought that maybe I could calm him down and it would help his breathing, we they handed him to me and I sat holding him in a chair.
He continued to struggle for breathes as his little chest seemed to collapse into his back. His skin began to turn gray and lips started losing color. The sheer look of separation in my baby's eyes, will be forever etched into my brain. His eyes were begging his mommy to help him but I was helpless to so anything but rub his head and talk to him. His daddy also took a turn doing just as I did. My eyes met my husbands eyes several times but there was no correspondence between the two of us. We just kept looking at each other, thinking we have come this far and fought this hard, but we are still going to lose our boy anyway.
They were checking blood gases every few minutes and blood gases were getting to a critical level. Finally, Brady totally lost what little breath he had left and his airway just simply closed. He went limp in my arms and I just remember leaping from the chair, tossing him onto the bed, telling the docs to fix him and do it RIGHT now. I told them to put that tube back immediately. Once they got him on oxygen, his breathing did come back but was still shallow and he was obviously still in distress, so they had the ENTRY team come up to scope him. They found growths blocking his airway...growths caused by the tube. They quickly revented him and told me once it was all over, that there was no medical reason why or how that tube was able to go back down his blocked throat...it was GOD! He was taken down for surgery and came back a new kid. This time the docs asked us to stay with Brady while the tube was removed.
After it came out, he coughed a little and then gave us the biggest most beautiful smile I've ever seen in my life :) :) He then signed hungry, bahahahaha! The child hadn't eaten in nearly nine days, so no doubt he was starved. The kitchen made up some grits especially for him and he ate the whole bowl.
We were moved out of the PICU and to a regular room where we spent a few days. They wanted to do one more EEG before we left. I remember telling my husband that my heart just couldn't take it if he was back in status. Our nerves were shot and having to wait for that EEG did not help. It was all fine and we were finally taking Brady home where he belonged.
And here we are three years later without a single seizure since that horrific experience. Life is awesome, God is great! Tonight we celebrated Brady's health and the awesome folks at Santa FE done a huge shout out to him...I will try to post the video later.
Sorry for the long story but I've never fully shared it before, so thought it was about time. Hope everyone has a blessed night/day. Don't forget the cherish every single moment with your love one, tomorrow isn't guaranteed. God Bless!



posted by angelwings @ 2:13 AM
   2 comments
Thursday, July 03, 2014




posted by angelwings @ 9:20 PM
   0 comments
Sunday, June 29, 2014

Well we are getting ready for a big week :) Our Canadian Angel friends are coming to Bama to stay with us for a week and Friday we head to Florida for a big party with eight other Angel families. 
There are so many parts that I don't like of Angelman Syndrome but I will never regret the huge extended family that we now have because of it. We have an occasional bad day, but who doesn't? Our lives are rich and filled with so much love. Had we not experienced Angelman Syndrome, I'm not sure that we would have truly learned what a blessing each day and just how lucky we really are.
We don't need or want pity. All that we want is for our sweet boy to be loved and accepted for who he is...we have this :)
A few weeks we spoke with the manager here at our local Winn-Dixie. We asked if they might be interested in getting a special needs shopping cart, called Caroline's cart. Within weeks I got word that the cart was at the store! We went in a few days ago and tried it out, it was amazing. No more pushing a stroller with a 50lb boy in it, while shopping, and pulling a cart behind me all at the same time. Brady does walk but he gets tired after shopping for a while, not to mention he fully enjoys emptying the shelves as we pass by them, lol. This cart will help us tremendously and even more so for those people who have kids with special needs that can't walk at all. So a big shout out to our Winn-Dixie for looking out for our families here in Covington.
Anyway, I'm off of here for now. Have lots more to do before our company arrives. Pictures coming soon! 
 

posted by angelwings @ 11:48 PM
   0 comments
Tuesday, June 24, 2014
So today I am cleaning, getting ready for a case manager to make her monthly visit. I hate having to do this just to keep Medicaid. 
It seems so unfair that they have to come check up on Brady and "lay eyes on him" just so that he can have Medicaid. Why is it that because he has special needs and gets Medicaid, we need to be "checked up" on; however, those who just have regular Medicaid don't require monthly visits by three different people?
 It seems logical that if we have kept him alive all this time, we must be doing something right. I'm sure are typical children out there who are being abided but no one is checking up on them. Are we more likely to abuse him because we are above the financial guidelines for getting regular Medicaid?
Do they come because they think his Angelman Syndrome is going to magically disappear and we won't need it anymore? 
Rest assured, Medicad and the rest of the world, when it is cured, everybody on God's green planet will know about it. We will be celebrating in so many ways and will also be celebrating the fact that we no longer need Medicaid to help cover copays on $20,000 worth of yearly seizure Meds, copays on his $25,000 VNS, copays on $5,000 strollers, copays on the 30+ Hospital stays by the time he 7yrs old, etc.
Anyway, I can't complain. We know why it's like to incur all of these Medicaid bills without Medicaid, as we did so for many years. I am eternally grateful for the young woman who went out of her way to help us qualify...life was scary, unsure, and difficult for is back then.
 I just wish that the government didn't make it so hard for working class people to get help for their children who have special needs. Not only are we forced to earn a medical degree overnight, we are forced into the role of investigator, advocate, chauffeur, and champion boxer, as we constantly have to apply our boxing gloves to fight the many battles we face and navigate this crazy system. In the end, it is what it is. We would care for our child with or without all that tax money that we pay in everyday, but a little help does make our chaotic lives a little easier ;)
I don't worry for us, I worry for all of those hard working people who still have zero help with their special needs children. Lord knows any working class person pays in a fortune in taxes everytime their payroll check is printed. It's just sad, very sad.

posted by angelwings @ 12:42 PM
   4 comments
Such powerful messages in these pics.
Brady, Chels, and Sierra all believing in a cure.
July 2011 running for Brady as he fought for his life in a coma due to seizures.
Brady's running buddies running for awareness and believing in a cure.


posted by angelwings @ 1:02 AM
   0 comments
Bracelets and cookbooks for FAST

Just one more thing that I forgot to mention. We are selling bracelets to help find Angelman research. All profits go to the Foundation for Angelman Syndrome Therapeutics. If you would like to order, send an email to sfore@centurytel.net and I will take care of you. Also, our friends are selling amazing cookbooks to benefit FAST. If you would like a cookbook, you can go to http://www.cureangelman.org/news/CookbookDetails.html I look forward 
to hearing about the awesome recipes that you try out from the books and to seeing pics of those bracelets on your arms. #cureangelman 


posted by angelwings @ 12:32 AM
   0 comments
Monday, June 23, 2014

Hello everyone! Just got a reminder about our blog tonight and thought I would post :) Things are great here! We have been seizure free since our last coma in July 2011!!! Such a huge milestone!! We are coming up on our three year anniversary if being seizure free...never thought I would be able to say something like that.brady is down to only two seizure meds and his VNS and he continues to rock life. So many milestones met just in the last couple of years, that it's impossible to post about them all. He can now feed himself independently, navigates his Ipad better than even I can, has about 26 words, and communication is amazing. He is a happy healthy boy. We just got back from camping, so he is catching up on his sleep. We had a blast meeting new people and meeting up with some of our favorite Angelman peeps. We are getting ready for our friends, an angelman family, from canada to come visit with us next week...super excited. We are going to a 4th of July party where there will be 7 other Angels...can't wait for all of the chaotic fun that we will have. Quick story from today. Brady's dad was chatting with me and he spelled out "do you think Brady wants to go to maw maws house"...Brady jumped us shaking his head yes and led his daddy to the door,lol. That little stinker knew what his daddy was spelling. I don't know why I'm ever amazing at anything this child does. I swear he is so smart and understands everything. Anyway, life is great. We are living it to the fullest and enjoying all of the healthy happy times together. Hope all of you guys are doing well. Feel free to shoot us a comment and let us know what's going on in your lives ;) Peace out until the next time!

posted by angelwings @ 11:48 PM
   0 comments
Tuesday, February 18, 2014
So just a quick post. Things are going very well here. Brady continues to grow and learn every single day. He continually proves to us that he is one of the most awesome, smartest kiddos ever. So far he remains seizure free and his EEGS remain normal. We really don't have any complaints, as our lives are more normal than they have ever been...I mean what is the definition of normal anyway,lol. We just celebrated Internation Angelman Day on Feb 15th and had a blast. The whole week was full of FB and twitter posts about Angelman Awareness. We had nationwide Ruby Tuesday fundraisers for our research organization, (FAST)Foundation for Angelman Syndrome Therapeutic, so hopefully we raised a ton of money for more research. As most of you know, Brady was part of a clinical trial for a potential Angelman treatment. We are still waiting on all the peer reviews to be done, so that results can be published. I can't provide details about what we have seen, but I will say that it has been nothing but positive for Brady and we are excited. Can't thank FAST enough for all that they do for our kids. We are no longer being told to do therapy and maintain the course because there will never be a treatment. FAST has shown us that there is reason to reach for the stars and have HOPE! They have shown us that a cure is "not only likely, but eminent". I promise to share trials results when the results are released ;) Anyway, Im tired so thats it for tonight. Keep watching our blog because I will be posting a firstgiving fundraiser link for FAST. Will post more soon!

posted by angelwings @ 10:19 PM
   0 comments

posted by angelwings @ 10:06 PM
   1 comments
Sunday, August 11, 2013


posted by angelwings @ 12:53 AM
   0 comments
Brady update
Okay so its been a while since I posted...sorry about that. Things are good here. Its been a rough few weeks as Brady has been recovering from having his VNS battery replaced. He has been miserable from the stitches but seems to be getting better everyday. Had some miscommunications about his settings so had to make some corrections, but hopefully all is well now. He just made it past his two year seizure free anniversary so we are beyond thrilled about this. Its hard to believe that this time two years ago, he was just recovering from a coma! I thank God everyday or our many blessings, as there are so many. To have all of my family here with us and healthy, is a blessing like no other. Brady is making great progress these days. He has more words, communication is amazing, and he uses his iPad better than even I can,lol. The coolest part is that he can now use his iPad to say "I love you" and he does this quite often :) Anyway, it seems that all of my batteries are nearly dead tonight, so I have to sign off. I promise to update more tomorrow and I have lots of pics to share with you guys! Again, sorry for getting preoccupied and not posting more. Lots of big things coming up, so I promise to post ;) Have a blessed night!


posted by angelwings @ 12:49 AM
   1 comments
Monday, December 17, 2012
Well its been a while but I wanted to let everyone know how things are going here. Brady is doing amazing. He remains seizure free since last July (knock on wood); he is thriving. I traveled to Chicago recently and had an opportunity to hear Dr. Weeber speak about the trials. He of course could not share details but did say that so far results have been positive. Keeping my fingers crossed that all continues to go well for every participant. Not much going on here aside from the busy life of Brady. Anyway just wanted to let everyone know that we are doing well. Will post more later.Hope You all have a Merry Christmas!


posted by angelwings @ 12:04 AM
   2 comments
Sunday, October 21, 2012
Brady pics


posted by angelwings @ 3:06 AM
   1 comments
Brady Update
Hi guys, it’s been a little while since our last post! Sorry for the delay but we are trying very hard to remain discrete. Brady completed his part of the trial at the beginning of August; however, we are still unable to share details until the trial is fully complete. Hopefully something will be published pretty quickly after the last participant’s visits in Feb. I totally understand that everyone is anxious, nervous, and excited. We are even anxious to know all the results, as we only know about Brady. Many people have asked "why can’t you talk about the trial", so I will try to explain. The Tampa team does not have us under gag orders....they never told us that we couldn’t talk about it; however, after learning the process, we all agreed that it would be best to be as discrete as possible. The Mino Trial has no placebo, which means that all 24 participants get the real medication; this decision was made by a board of many specialists. Much of the info that the researchers receive, is based on parental report. Brady was one of the first to start the med and first to complete his part of the trial. If we spoke to those who have not gone or are still in the middle of the trial and told them what we did or did not see, it could influence what they see and report to the researchers. The info that the parents report should be based on what they see or don’t see, rather than what they expect based on other people's experiences. We hope to have concrete and accurate results, not results that have been skewed by people comparing notes. Aside from this, if participants began reporting seeing positive results during the trial, it might influence others outside of the trial to put their children on Mino. I’m sure that this has already happened; however, there is no real way for many to know proper dose of mino in the possible treatment of Angelman Syndrome. If too much is given it could have negative effects. If too little is given, it may have no effects. So while I know that everyone is eager to find out what is going to happen, I urge you to wait and get all of the details next year. The point of a trial is to see if this medication is an effective treatment but also to determine proper doses, schedules, etc., if it is a treatment. Being patient can be so difficult when it comes to your loved ones but please hang in there and give it just a little more time. Be excited in knowing that big things are happening in Angelman research :) Our researchers are working extremely hard to find an effective treatment and we have so many potential treatments already out there. It’s not a matter of if we will one day find a cure; it is a matter of when. We just have to have faith and keep raising funds to make it happen ;) Sorry for the long post but just had to say all that. Btw, Brady is doing amazing these days. July was one year since his last hospitalization/coma; he has remained seizure free to date :) I will try to post some pictures if I can get them to upload and I promise to share trial info just as soon as I can. Hope you all have a blessed night.


posted by angelwings @ 3:04 AM
   2 comments
Tuesday, April 10, 2012
Tampa Bound NEXT WEEK!!! Brady will be participating in the Minocycline Clinical Trial! This could potentially change his and many other's lives for the better. Keeping all fingers and toes crossed! Saying lots of prayers for him and all our other Angels. Go Tampa 24!! Please keep all our families in your thoughts and prayers over the next several months. This is only the beginning of an amazing journey! Thank you, to all who have made it possible!

posted by angelwings @ 12:45 AM
   6 comments
Saturday, March 31, 2012
Post via the Lend a Helping Wing Fundraiser: Lend a Helping Wing

Fellow Angelman Community Members:

As you know, the Minocycline Clinical Trial is about to begin. Twenty-four children with Angelman Syndrome, now affectionately known as The Tampa Twenty-Four, have been selected to participate in this potentially life changing trial. Each family participating in the trial must travel to Tampa, Florida, USA three separate times, at their own expense, as a part of their commitment to the trial. While many of us applied to participate and were not selected, and many of us could not apply due to the expenses involved, we can all contribute to help defray the significant costs to the families who were selected and were willing to make the sacrifice for the good of the whole community.

While each family's costs will vary, our goal is to raise a minimum of $3,000 per family, or $72,000.00. $120,000 would be even better. This may sound ambitious; but it is the Angelman community, and their friends, family and loved ones, a formidable and supportive force, that have brought us all to this point in time. We can all participate in our own way in this groundbreaking trial, by making it possible - and less expensive - for those who will actually be taking part. These raised funds are in addition to the $1,000 provided to each family by FAST. One organization can only do so much: We, the Angelman community, through this grassroots effort, can do the rest!

Please give generously and ask those around you to give generously. This could literally be a historical moment in Angelman Syndrome history and YOU can help make it happen.

For more information, including disbursement schedules, details on fund management and other specifics, please click here.

Sincerely,

Marc Bissonnette
Dale Jackson Van Hal
Tony Vidray

Go to: Lend a Helping Wing to donate. Thank you all in advance! Lets get all the families to Tampa! We should all be excited about what is to come and not have to be worried about the financial burden that some could potentially face, while trying to get there. I have faith that we CAN make this happen for all the participants!! :)

posted by angelwings @ 12:13 AM
   0 comments


What is Angelman Syndrome?

                 

About Brady

Read Brady's Story Here   

I am 11yrs old and I have Angelman Syndrome. I may have this syndrome, but I dont let it hold me back. I love life and live it to the fullest every single day. My mom says that our research organization, Foundation for Angelman Syndrome Therapeutics, is working really hard on a treatment or even a cure for me and my friends. I am thankful to have 25 words but I look forward to the day that I can carry on long conversations and talk so much that everybody has to ask me to please be quiet for a few minutes :) Anyway, mom says Im awesome and super funny and I have to agree,lol.

See my complete profile

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Interactive Seizure Diary

This downloadable Interactive Seizure Diary helps you track your seizure activity and medication routine. You can also record doctor appointments and notes about how you are feeling. Before a doctor appointment, print the information and share it with your physician.

Angelman Forum & Chat

The AS Forum was created in April 2005 and provides an easy way for family members and carers of people with Angelman Syndrome (AS) to exchange information with each other.

Cure Angelman Syndrome

The Foundation for Angelman Syndrome Therapeutics (or FAST) is an organization of families and professionals dedicated to finding a cure for Angelman Syndrome and related disorders through the funding of an aggressive research agenda, education, and advocacy.

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