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
   7 comments
7 Comments:
  • At 10:40 AM, Blogger Unknown said…

    Reading this really put a smile on my face. My daughter Charlotte was diagnosed at age 21 months with Angelman Syndrome. My wife was 4 months pregnant with our second child at the time. Hearing the diagnoses from our genetic doctors was one if not the most painful experiences of my life. At the time it felt like our lives were over. I have since came to believe that we have been blessed with this little Angel. She is an amazing little girl with some much love to offer. She was in a home daycare and was doing very well with her abilities. The other children were all drawn to her and she was very popular. We have since gotten her into a bigger daycare facility were she has an inclusion worker who works directly with her on a daily basis. Our second child was born in early August of 2016. He was tested immediately and we awaited results for 12 weeks which came back negative for Angelman Syndrome. Charlotte has become such a great big sister and helper with the baby. She does have some issues with biting and pulling hair which we are trying to correct by giving her teething bracelets and necklaces. Charlotte began to walk unassisted about 5 weeks before her second birthday and the joy on her face and ours could have lit up the city I am sure. She was sleeping very well, most nights she would sleep 10-11 hours. I the last month or so I have noticed that her sleep is regressing and she has been waking after a couple hours and staying up for the remainder of the night. This has been extremely hard on our family as we have a new born that doesn't sleep. My wife tends to him and I am with Charlotte most nights. I work during the days and I have found myself having a very hard time at work on no sleep, sometimes 2-3 days with maybe a hour a day. We have not experienced any seizures with Charlotte, which is a good thing.
    Reading and learning and reading about Brady and your family has really brighten up my day. I will continue to check out your posts

    The Sinclair Family, Winnipeg, Canada

     
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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.

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 Okay, so I often hear the phrase "I hate Angelman...
  To all the educators of siblings to special needs ...
 
  I CAN (Cure Angelman's Now)!
  Eegs before and after mino.
  Minocycline results are out!
  Brady riding the jetski
  Chatting in the car
  Brady chatting in bed
  Feeding himself salad
 
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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.

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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.

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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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