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Char Burke
  • Female
  • Seattle
  • United States
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Char Burke's Discussions

High IGF-1

Started this discussion. Last reply by Janine Sep 15, 2012. 3 Replies

Elevated ALTSGOT

Started this discussion. Last reply by Ofir Arad Jun 14, 2012. 5 Replies

Personalized medicine for rare mutations READ THIS

Started this discussion. Last reply by Terry Porcaro Jul 6, 2011. 2 Replies

 

Will's World.............

Latest Activity

Vinu Joseph replied to Char Burke's discussion FDA states Exon cocktail must go through clinical trials for each exon!
"Dear Bains, I hope that you and your child are fine by grace of God. I have two children 9 and 5 years old, we too am looking to find if there is any advancement in Exon 11 skipping yet. Please let me know if you hear any thing God bless and best…"
Apr 5, 2016
Limca Jhaveri replied to Char Burke's discussion Calling all duplications - and checking in on status of where our guys are at in the group Duplications
"Hi, I am new to this.  My son Jaylen was diagnosed with Duchenne in August 2015 so we are still trying to cope with the diagnosis.  He is 3.5 years old and has a duplication of exon 46. He is walking, runs but waddles, can climb stairs but…"
Oct 18, 2015
Amelia replied to Char Burke's discussion what's your all bmd mutation? in the group Becker Parents
"My son Hayden age 5 was diagnosed with Beckers on 11-20-14 by Dr, Wong, he has a nonsense mutation in exon 28.  Diagnosis was based on his physical test, cpk test, and family history. We are going to go back in a couple months for a muscle…"
Nov 23, 2014
Char Burke commented on PPMD's group Duplications
"Just checking in with my duplication friends to see how everyone is doing.  I am struggling with the fact that my son has a duplication and won't be eligible for any exon skipping any time in the near future.  It's great that DMD…"
Nov 14, 2014
Dalibor Randjelovic favorited Char Burke's discussion Calling all duplications - and checking in on status of where our guys are at
Oct 30, 2014
dietf replied to Char Burke's discussion Calling all duplications - and checking in on status of where our guys are at in the group Duplications
"Hi, I have two sons. Both has the same kind of duplications. 1) homozygous mutation in exon 39 2) Both has no problem, can walk, run(not like other boys but still can run). 3) We are using deltacortil steroid. 5 mg for a day. We don't use any…"
Oct 30, 2014
Ana replied to Char Burke's discussion Calling all duplications - and checking in on status of where our guys are at in the group Duplications
"1) Austin has Duplication 53-60 2) Non-mobile, wheelchair all the time.  Can still eat and drink on his own but does need help dressing and washing hair.  3) Austin takes Lisinopril, Carvedilol, and Spirinolactone for heart meds (heart…"
Oct 19, 2014
Char Burke added a discussion to the group Duplications
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Calling all duplications - and checking in on status of where our guys are at

Hello fellow duplication parents - I wanted to check in and see where you son's are at.  Can you respond and list the following?1)  what duplication does your son have?2)  How is your son doing including level of mobility?3) Anything you think that is helping as far as RX, activities, supplements. etc4) How old is your son?5) How is school going? DMD is a rare disease and duplications are the rare of the rare.  If you know anyone that is not in this group - reach out to them and invite them to…See More
Oct 19, 2014

Profile Information

About me:
We adopted our son, Will, from birth. We didn't know about the DMD. We love our son beyond words. I love being a mom - it is the best part of my life...I enjoy reading, helping our son learn new things, exercising, gardening and music...and our two crazy Norweigen Forest Cats - Billie and Kari - who love to chase each other around the house!
About my family:
We live in Seattle, WA We take Will to Cincinnati to Dr. Brenda Wong for care. We love Dr. Wong! We are a two parent working family. We have family in Mt and Kentucky and CA. We try very hard to live in the moment and not look forward to what may or may not happen. Easier said than done with a disease like DMD.
Name(s) of child(ren)/individual(s) with Duchenne:
Will Burke
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
Seattle

Char Burke's Photos

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Char Burke's Blog

During this season of holidays, I wanted to pass along an incredible story. I was able to talk to a nurse that cares for a set of twins that have DMD. They are 51!!!!! They have alot of support with …

Posted on December 14, 2008 at 11:47am 1 Comment

During this season of holidays, I wanted to pass along an incredible story. I was able to talk to a nurse that cares for a set of twins that have DMD. They are 51!!!!! They have alot of support with medical equipment but are mobile....In fact, they coach teams, go to university games and are out and about quite often! Their quality of life is good. At first I thought that they were BMD but was told that they lost ambulation @ age 8 which certainly would be more consistent with DMD. No steroids… Continue

Coach for a Cure

Posted on October 7, 2008 at 12:22am 0 Comments

Today I feel like we made a contribution for DMD. We participated in the Coach for the Cure. The Coach for a Cure campaign is an arrangement with the American Coaching League. An individual by the name of Brad Todd, has a nephew who has DMD, helped orchestrate the event. Brad has been working for two years to get PPMD on the American Coaching League's dance card if you will. This year, he was successful and today we participated in a commercial that will be aired on Oct 25th during college… Continue

Comment Wall (139 comments)

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At 10:11pm on June 5, 2012, Wyatt's Mommy, Melissa said…

Hey Char, how is everything going. I haven't talked to you in so long. Things are crazy around here.  My daughter is graduating in a few days.  Always something going on.  Hope you guys are doing well.  Take care

At 2:23pm on August 4, 2011, Stefanie Killian said…

Char,

 

I had not talked to you in a while and I thought I would check in.  How is Will doing?

 

Stefanie

At 4:58pm on June 12, 2011, Andrea Cleary said…
Your page shows that you have 100 photos. #15 to 20 are of my family! I was looking at them earlier today when I read your comments about the punch biopsies, when I saw that your son was in the 7-12 age range like my Simon.
At 5:36am on May 31, 2011, Brandy Clift said…
Hi Char.  I have seen many of your posts around the website.  I can tell you have loads of knowledge to share!  We are not newly diagnosed. Cody is 8 and has been diagnosed since he was 6.  I am his step-mom, so I don't have all the information on which doctors he sees.  I know he was going to Cinnci once a year for treatments and tests, but I think that has been put on the back burner due to financial reasons.  I wrote down the name of the Dr that several people were talking about that came from Denver to Seattle.  I am going to pass it along to his Mom to see if she would be willing to take him up to childrens for possibly the 'next best thing' to Dr. Wong.  I try to research as much as possible and stay educated on Cody's condition.  Even though I am just step-mom, I care tons!!  As far as where he is at progression wise, we recently had to take him off the steroids due to weight gain.  It's only been about a month since he quit the prednisone.  He is noticibly weaker.  His moods seem to be a bit better.  I feel like we are just teetering on weather he needs to be in his wheelchair.  We live in Orting, but I work in Tacoma and we are always out and about.  I haven't read all about you so forgive me for asking, I assume you have a DMD child also?  Tell me a little about your situation. 
At 2:30am on January 2, 2011, Katherine Blake said…
Hi Char - send me your email address again...or just use nomadscarpet@yahoo.com or blakek@aafes.com
At 3:40am on December 30, 2010, Katherine Blake said…

Hi Char - My son Eli turned 7 in September.  I do understand that each child is different in all of this - which is fine.  I just like knowing that there are more of us out there - there's a lot of comfort in that.  Currently, I am in Germany working with the DoD, but my support center/home address is Dallas, TX.  I do have family in Philly so I am considering making a visit to CHOP.  Where are you? 

Thanks for responding...this is the first time I've reached out and so I appreciate you taking the time to comment.  Katherine

At 12:12pm on December 18, 2010, Wyatt's Mommy, Melissa said…

We are very excited about the baby.  Wyatt is too.  I ask him where they baby is and he puts his cup of milk up to my belly button to give Carter some milk, it is very cute.  We are so lucky to be able to have a big family.  Tom and I are very blessed beyond anything we would have ever imagined.  Wyatt was actually diagnosed in Seattle at 10 months, we went to see Dr. Wong when he was 15 months.  But Dr. Wong did confirm the diagnosis.  Like I said, it's not really jumping, but he thinks it is.  Wyatt is a deletion of 49 and 50.  We are looking forward to Exon Skipping very much.  I hope that it works like they say.  I pray every night that a doctor will help ALL of our boys. You are right, we don't really know what will happen in the future.  We can just be hopeful.  It's justs so hard watching our babies struggle.   It is really hard to be positive all the time.  Like I said, if you are ever sad or happy or angry, whatever, call me.  We are in this together. 

At 10:35am on December 17, 2010, Wyatt's Mommy, Melissa said…

Our baby is due March 4 and he is a boy.  We are naming him Carter.  Thankfully, because of IVF/PGD he is a healthy baby.  We are so lucky that he won't have the struggles that Wyatt will have.  Each of our children are a miracle to us, and having Wyatt was one of the best things that ever happened to me.  He is the most loving kid.  So no matter the issues that he faces, we are going to face them head on and beat this horrible disease. 

 I am so lucky to have met you.  I hope that we can continue on this battle together.  Char, if you ever need anything, even just to talk, call me.  If you don't have my number let me know.  There are days when I'm sad and lonely and just need to talk to someone who understands.  If you ever feel like that, you can call me morning, noon or night.

At 10:31am on December 17, 2010, Wyatt's Mommy, Melissa said…

Char, well, what Wyatt does isn't really jumping.  He just calls it that.  He more hops, but he's only 2 so I wouldn't expect him to jump anyway.  Not to mention, like you said boys with DMD can't jump.  Even though he is so young, I do notice the differences between him and my niece who is the same age.  She practically runs up the stairs, where Wyatt still has to crawl up the stairs.  I wish that Dr. Wong was wrong, but no he does truly have DMD. 

At 9:11pm on December 13, 2010, Wyatt's Mommy, Melissa said…

Char, how are you?  I haven't talked to you in so long, I hope everything is fine.  I just wanted to wish you a happy holidays and let you know that I think about you and will every day.  The baby is almost here so I promise to share the news of his arrival ealy next year.  Take care my dear friend.

Love, Melissa

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