"So glad this is here to be able to read and feel what was going on in that room. I look forward to seeing my NJ fellow parents at a NJ FACES holiday get together tomorrow and get more updates on all this. Also looking forward to having some…"
"We switched to deflazacort about 6 years ago after my son was on prednisone for 2 years. It helped with weight and has lesser side effects. We get it from Masters in the UK and have never had a problem with delivery. You can get…"
"Hi everyone, My son Nicky has deletions of exons 2-21. We live in Alaska, so there isn't a huge amount of Duchenne patients locally. I am a bit confused because I e-mailed one of the Genetic specialist that spoke in the webinar about…"
"On our way to spend Thanksgiving in Lancaster, PA with Gene's parents, his sister and her family and her husband's parents. My mom comes with us as she lives with us now. My dad passed away 5 years ago and it is great to…"
"My son is 6. His name is Alxsandr. This autumn we are going to start steroids. Now he is rather mobile, but of course not so quickly as other boys. he can\t jump and run. What about your son? Is he on steroids?
The desease started since his…"
"My son has deletion in 21 exon as yours, is it true? I tried to find somebody with such deletion but couldn't.
We are from russia, my son is five. How did the deasese start in your case? It'll great to receive your answer"
"Hey Terry, Patti Frank here. We have two chairlifts. They were about $2,500. And we never put in to ins. for them. I don't think they will pay but jsut forgot about it but we just submitted to Catastrophic…"
I am 54 years old and Kevin is our only child. I am a carrier but did not know that when I had Kevin. Looking back at family, it turns out my mom had a brother who passed away in 1944 at 18 of respiratory failure. They always called what he had "infantile paralysis" but we thought that meant polio.
About my family:
My son Kevin is 9 years old and was diagnosed with DMD almost 5 years ago. My husband Gene and I are so thankful for PPMD and are part of the NJ FACES group of parents. Kevin is a great kid and doing pretty good right now. He is surrounded by great friends and we have an extremely supportive community around us. Kevin has a frame shift deletion on exon 20. Only a small piece of DNA is missing from exon 20. Check out Kevin's website at www.caringbridge.org/visit/kevinfrank.
Name(s) of child(ren)/individual(s) with Duchenne:
Hello patti! i just called and your son answered the phone .. such cute voice... i also having very tough year with Sebastian... well, i wil like to talk to you too! i'm home every morning! wish we could have a talk...i have same cell phone,, 973 2828-6090-- home 973-932-8800..
Hey Patti!! I would love for us to be able to get together while we are in Cincinnati. I think it would be good for Kelby!! Dont know how your son is dealing with all the things that are going on with him but my Kelby is having a very difficult time here lately. He is on Prozac but it doesnt seem to be helping. As for me I have remained strong until today and I myself am having a meltdown. Wish that Kelby could find some sense of peace. How is your situation. I am on facebook. Would be really great to talk to you. Please be in touch.
I was just reading your reply to my message on the Dr. Wong Cincinnati group and noticed you would have been there on Dec. 9th but your dates changed.
Yes, I did enjoy seeing Kevin on TV. I also called my parents and had them look for him. I hope (if it is his desire) that he will have other opportunities.
Maybe one of these days we will meet. It would be nice. I keep wishing I could find a way to go to the PPMD conference held in the summer.....maybe someday that will work out. Do you go?
Hi Patti, James is doing really well. The cast is off now -came off on Monday. His Consultant wants him to start partial weigh bearing and mobilization. His ankle was still really swollen and brused, but we have been elevating his leg every day when he gets in from school and it seems to be doing the trick - he can now get both shoes on! His phsyio is great and duing the six weeks in cast James was doing strengtheing exercises on his good leg. Now thats really strong (as well as his upper body with all the transferring) that he can now stand using a standing frame and has taken about 10 steps. We are doing the partial weight bearing and steps twice a day and he is getting better and better at it. We are back at the hospital on 2 November for further xrays and hopefully the bones will be fully healed. He is also going to start hydrotheraphy for 6 weeks intensive treatment in November. How is Keith?
My name is Pilar I'm from New Jersey my son is 11, still walking around difficulty going up the stairs or standing up, but still going, deletion 13-17 shfitframe also.
My son Sebastian is on prednisone 20miligram, every other day. I willlike to meet somebody from New Jersey or group ... thanks.
I just got back from California, so sorry for the delay.
It sounds like our boys have alot in common!
Miller will be 14 in 2 weeks and he is like your son, he uses a gogo for school and distance and does everything else on his feet. I took him to Legoland out West and he did pretty well! He even walked to the restroom on the plane by himself (while I was watching and biting off what nails I have left)
He is really starting to complain about his height. His brother is 6"2 and it really ticks him off!
Miller is on Deflazacort as well and has done pretty good with it. We go to Toronto in about a month and I'm wondering if the Dr. will up his dose.
We got the house finished, and it has been a huge blessing. We bought our lift on craigs list for like 800- and had an automatic door opener put on his door so when he comes home from school all he has to do is hit the remote. That has been really nice.
Trust me when I say I know how your feeling about the day when he cant use his legs. The hard part is there is no set day or year. I remember when we first went to the MDA doctor and the numbers they gave me were crazy, but he continues to surpass all those expectations.
Miller has been challenged by school since he started, and is now starting to come around. Having a learning disability and DMD is like a double whammy, but once he gets it he's fine it just takes him longer!
I was looking at your photos and Kevin looks like a well rounded young man! I hold nothing back from Miller and if hes up for the challenge I let him go! I'm just crossing my fingers he wont want to skydive in the near future!
Keep me posted!