"Hello Everyone
My son Aditya is 8year old and has single exon 52 deletion.We are looking for exon skipping therapy.Is anyone of you getting exon skipping therapy done for your kids.Any inputs on this would be very helpful."
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Holly Cahoon
- Female
- West Jordan, UT
- United States
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Back Fusion Surgery
Started this discussion. Last reply by Holly Cahoon Apr 11, 2014. 5 Replies 0 Favorites
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- About me:
- I live just out side of Salt Lake City Utah. I am married with 3 children and 1 stepdaughter. I work full time for an Equipment Leasing Company.
- About my family:
- I have been re married for almost a year now to the most wonderful caring man I know. Together we have three daughters, ages 6, 8 and 11 and 1 son, Tyler Padilla who is 16 with Duchenne. He loves anything to do with the weather. Tyler was the Utah's local MDA Ambassador for 2006, it was such a fun year helping to raise money and being on the local news here for the telethon.
My oldest daughter, Rylee helps me so much with Tyler, she's my little side nurse. My Biggest Hope and dreams are to find a cure for DMD, or help make the quality of life I do have with my son the best it can be. Tyler has a younger sister, and younger brother also with his father and step mom. We have a wonderful blended family that has so much love and support for Tyler, we are truly blessed.
- Name(s) of child(ren)/individual(s) with Duchenne:
- Tyler Reed Padilla
- Age(s) of child(ren)/individual(s) with Duchenne:
- 13-18
- City:
- west jordan
- State:
- UT
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Depression
Posted on January 21, 2009 at 2:08pm 8 Comments 0 Favorites
My son Tyler has Duchenne MD, and will soon be turning 12. He is usually a pretty happy kid considering, just seams lately he has been so depressed with the every day issues of dealing with his disease. He also has a learning disability with his Duchenne, so he's more on a 6 year old level rather than 12. He has been asking me more and more lately why he can't walk like his siblings, and it's not fair and will break down in tears. I am usually the strong one and will always let Tyler know that… Continue
Comment Wall (22 comments)
- At 1:14pm on August 14, 2010,
jenn said…
- hi holly, just checking in, about the prosensa trial. we are in columbus, our last appointment at the hospital is monday morning. wondering if you guys ended up in the trial, and if you are here now, austin wished to have met more boys here. hope all is going well
- At 12:24pm on April 10, 2010,
jennifer renshaw said…
- The trial Andrew was to be a part of has been put on hold. Disappointing, but what can you do. We are hanging in there. Hope you are too.
- At 11:16pm on September 17, 2009,
Ana said…
- Hi, Holly. Thanks so much for your last reply. This is a very hard stage obviously!! I've been shocked and scared, and really freaked out when he does this. It's great to hear about other's experience w/the same thing. Makes me feel less alone.
A couple more questions....
Did you already have everything set up in your house by the time Tyler was to this point? The biggest problem we're having right now is that our bathrooms are not accessible to his chair. The medical supply company is supposed to be contacting me, but for some reason I still havent heard from them. I'm wondering what it's going to cost to get my house completely accessible for him in his chair. And, if there's any help in paying for it....
How is Tyler and your family? Hope all is well!!!
- At 11:07pm on September 8, 2009,
- Hi, Holly. I hope all is well. I had a question I hope you may be able to help with. Austin recently had two days in a row when he could not walk or stand at all on his own. Then the next morning he walks out of his room to the kitchen and pours his cereal... Again, tonite, he started doing the same thing. I'm thinking tomorrow may be another day like before. Have you ever seen or heard of this before? I have called the Dr and talked to the nurse to explain the situation, and I am still waiting for another call back. Any help or advice is welcome!! Thanks
- At 10:18am on September 5, 2009,
- Thanks for asking about the trial. As of now we are still waiting for dates to be set. Aparently it takes a while to pull these kind of programs together. I will post when we hear something. Take care.
- At 3:58pm on August 6, 2009,
- Hi Holly. I'm not sure if they are still recruiting patients. If you are interested in the study it would be worth it to contact them. I do not believe that the study has begun, as they were interested in having Andrew participate in the study. I am just waiting to hear from them. Take care. Jennifer.
- At 4:22pm on July 19, 2009,
- OMG, yes, he does not stop talking!!! lol, Austin takes Focalin XR 15mg. He has taken it now for 3 1/2 yrs and it works well. He is very impulsive vocally, and acts out vocally to get his attention since he cant burn all his energy physically. He's really a very funny child but will drive everyone around him crazy once his meds have worn off for the day.
The Focalin is a 10hour medication so, he takes it about 6:45am and it's wearing off about the time he gets out of school, so, we still deal with all of the talking in the evening. I also think Austin may be OCD... Which is the cause of so much anxiety for him. Hope this helps.
- At 5:49pm on July 15, 2009,
Renee Azzouz said…
- Holly thanks --thats what I was thinking too. I appreciate the resource of someone who has been there
- At 5:59pm on July 14, 2009,
- Holly-- thanks for the note. My son does not know he has DMD at this point--I know in time he will ask question but he is happy now and I dont want that to change until it has to. Tyler is Im sure really having to manage alot. At what age did he start questioning?
- At 9:54pm on July 13, 2009,
- Hi Holly,
It seems that Tyler is alot like my son Austin. Austin has ADHD along with being learning delayed and having DMD... Austin will be 11 in August and I have seen such a huge decline in his abilities in just the last couple of weeks. I know Austin notices this too, and he has made comments, I think he understands more about this disease than I think he does.
I think they all do and kind of dont want us to know.... Like we all may have to face "their" (the boys') reality sooner than any of us want to.
I know exactly what you mean on being depressed and I've definitely been seeing it in myself alot lately.... Thanks for the post...
Ana smith
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