I'm interested in families with boys with Duchenne that are older than Garrett to help me out ... but also very willing to talk with those with younger boys that I can give advice or help to.
About my family:
We are parents of a 18 year-old with Duchenne MD. Garrett was diagnosed when he was 5. He broke his leg in 5th grade and was never able to walk after that. He's been in a power wheelchair since he was 10.
We have two fundraisers for PPMD each year: In February we have a Bake Sale - 2011 was our 8th Annual. We raised nearly $3,000 for PPMD. In July we have a trapshooting event that we call "Shootout for a Cure". In 2010, our 5th year, we raised over $15,000 for PPMD. This year we'll be having our 6th annual event on Saturday, July 16th, 2011.
Garrett has a sister, Erica, that is 32 years old, married & lives in the Twin Cities area.
After Garrett was diagnosed, I was tested and found NOT to be a carrier. Erica went in to get tested as well but they said she could not be a carrier if I wasn't. Well ... they were WRONG! She was tested in Feb. 2009 after recommendation from one of Garrett's doctors that said she had a 30% chance of still being a carrier.
UPDATE: Our daughter and her husband did genetic testing and went thru invitro to have a healthy pregnancy and gave birth to a beautiful baby boy on March 17, 2011. He will be tested for DMD when he gets a little bigger.
Name(s) of child(ren)/individual(s) with Duchenne:
I will be in Wisconsin after July 4th. Will be at the conference in Fort Lauderdale at the end of June. Will you be having the trapshoot this summer? If so , I will be there if I am in Wis. at that time. Thinking of Garrett. Our Grant turned six on June 5th.
I had a fundraiser on April 29. We raised almost$9,000 for duchenne. I will be on my farm near Richland Center by the mid to end of June. I plan on attending the trapshoot and will bring others. I will meet you then. Harriet Meermann
I live most of the year in Miami, Fl. but spend 2 months in the summer on our family farm near Richland Center which is about 60 miles east of LaCrosse. If you are still doing the trap shoot fundraisers in July I would like to participate. I have a 4 year old grandson with duchenne. I had a fundraiser in Miami last Feb. and will have another this feb.
Hi Vicky, of course I remember you. Nicolas is doing ok. He has been seeing Dr. Finkel. Jacqui decided to
change doctors because Dr. Finkel is involved with PTC124, Nicolas is a candidate for this drug, Jacqui would've liked for Nicolas to be part of the trials, but because he is not walking they couldn't be part of it. When the drug gets approved he will be getting this drug. He is doing very well in school. "B+ to A" student. He has lots of nice friends, he's as happy as he can be. Jacqui has been going through her ups and downs, I'm sure like everyone else. I'm glad your son is doing well. Take care, give my regards to your husband. Mariyn
Welcome Vicky to PPMD Community. Glad to have you aboard. Give it time. You will find older DMD boys to help. I am one of those that will be seeking answers as time goes. Thank you for your willingness to help.