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.
How are you and the rest of your family? We are ok...always busy running aorund somewhere. Kevin is having a bit of a difficult year in 1st grade. I really wish he had repeated kindergarten. He is so immature and I think he would have done better academically if he were in k instead of 1st. He is having more difficulty getting around. It is so hard to watch but we keep praying!
I saw your fundraiser on facebook. That's great!!! Good luck!!! Do you have a facebook? I looked for your name but there were lots of Gina Mannings! You can find me at my full name: Eileen McAdams Kearney.
Are you going to the conference this year? I'm not sure if we are. I really want to go but we'll have to see.
I'd love to get together when the weather gets warmer! Take care! Keep in touch!!