Thank you for the email. Mansfield isn't too far away. Perhaps we could meet some time and introduce the boys. My son, Luke, is 9 and was doing really well, but recently has seemed to degenerate a bit. Brings all the old emotions back from finding out the diagnosis....I sure hope the brink on which we are standing for better treatment and possible cure will soon be crossed. God bless...
hi there, wow, triplets! you must have been busy during the toddler years! I'm not sure where warren is, but im not good with that sort of thing. we live in a small town, just north of brattleboro vermont if that helps you at all in figuring out where we are, i always depend on our GPS to get me where we need to go. anyway, thanks for your message, hope all is well with your family, jenn
Please let me know if I can be of help. Your family is bsolutely beautiful! I think the good news is that Childrens and Mass General will be doing trials. You might register on www.duchenneconnect.org. It provides the ability to search for information and connects you to clinical trials. Once trials are posted, you will have the opportunity to read details and make decisions about participation.
Thanks for the info! We are seeing Dr. Kang at Childrens. We really like him because he is so nice and is also doing some clinical trials. But, we have heard about MASS Gen. and the Jett foundation. Is it possible to go to both? Not sure how all of this works yet.
Hi Cindy, Hope the transition back to school was good. My kids are loving it, but getting up in the morning has been a challenge for all of us. They start early up here. I'm glad I had the chance to meet you. Let us know when your in Vermont.
One of my boys is Calvin also. He is 12 and I have another boy Jared 9. They both have deletion 3-7. We don't live far from you.
I saw your boy is having trouble with reading. Both my boys struggled. Calvin seemed to finally get better around 3rd grade. Jared is still having trouble and he is in the 4th grade. Do you have an EIP for him yet? It has really helped with Jared. He gets special reading and writting help. We just try read with them everynight after stretches.