Hello Gina, I am new to this site and happy you requested my friendship. My son is 12 years old and was diagnosed very early (18 months) but what really brought me here was the concerns of some staff members at my son's school. my son has an aide with him all day. this is new this year and he is very comfortable with him but out of frustration occasionally my son will say things like i hate my life. however, i am not sure the aide knew how to handle this statement. I know this disorder can take a toll on him and the family but my son tends to say things out of frustration and not out of depression but I do appreciate their concern. anyway, my hunband and I have been reaching out more for emotional support such as seeing a councilor and of course this site to help us get through these tough years. I am from Clayton, NJ. sad to say there is nt many support groups around here that focuses on this disorder (DMD). How about yourself?
Glad to meet you! We live in Pottstown, PA. My boys Jake (almost 7) and Ryan (3 1/2) both have deletions of exons 46-47. We go to CHOP and work with Dr. Finkel. We try our best to do this thing day by day, but my mind doesn't always let me work that way. Jake is on deflazacort, and has lately had some issues with not growing. We'll be back to CHOP endocrinology tomorrow for some advice. How are your boys right now? Do you go to CHOP? We were also in Atlanta last year, but won't be able to make the conference this year. A family vacation is the priority this summer!
Hi Gina: I really enjoyed meeting you and your hubby in Atlanta and hanging out with you. I appreciate that you talked to me even though I am "not from New Jersey"....LOL Your pictures and video are great!! Beautiful family. Keep in touch. Hopefully, we will meet again at next year's meeting in Denver.
I'm glad you are hanging in there, but you have to because your kids need you. This MD sure does make you stronger than you ever thought possible. I certainly don't need to tell you about feelings, but I found out that a little bit of hope goes a very long way. Last week, we went to see the renowned Dr. Hoffman, the MD pioneer, as you know. The first thing he asked was how old Liam is. Liam was running, literally running all around his lab. We said he would be nine in about a month and a half. Point blank and straight faced, he said that Duchenne boys don't run at his age. They are mobile, but they don't run. Hoffman further said that the exon skipping 51 he was working on and that everyone is getting so excited about, would be the perfect thing for Liam as he is missing 48, 49 & 50. But when he saw Liam running, he said he may not be accepted to the clinical trials. Liam may be doing his own exon skipping naturally. That sent my heart into a downward spiral until Hoffman said that Liam would then have Becker MD. We now feel as though we have hope at either end of the spectrum. We have NEVER felt that kind of hope since this all started last June 12th when the diagnosis came down. Although the gray cloud still sits to the side, it is still there, but the days are so much better now and that little bit of hope stopped me from always looking to the end - the horrid end. I can now live more for each day and take stock in the fact that I've got an incredibly awesome kid who knows he's got MD and doesn't care. He has amazing self esteem and self confidence which carries him far.
From the photos of your family, I can see that you do much the same. You love 'em to pieces and are totally there for them no matter what. I have to think that there will be something for everyone soon because I cannot just have hope for myself and not others because we are walking down the similar road - a road that most people do not get or understand. All of your children are beautiful and happy and secure with you as their mom. Above all, they will be fine because you just cannot fake smiles like that. Let me know what you are doing for your boys medically and just as a mom.