I'm sorry if i upset anyone with my message of any families with young boys, we experienced the most wonderful, fulfilling,caring, happy, joyous i could go on and on..of our lives with our darling boy he brought us so much pleasure we miss him so much but we will go on and carry on raising awareness and raising funds for the hospice (derian house) they were a fantastic support and still are enjoy everyday and live for every moment xxx
Thank you for replying to my message, its been the hardest few months of our lives, matthew was our world and we miss him like i cant explain, he was loved so much by all his family. he was such a well and happy boy, his passing came as such a shock it was so sudden and unexpected, we had had such a perfect day with him i still cant believe it happened and how we are coping without him with us. you read literature regarding the boys condition and me and my husband believed we were so lucky with matthew as he had always been in such good health, we were so lucky. when the boys reach a certain age things change for them and we didnt see it coming (something i will never forgive myself for) the care matthew received once in adult services wasnt the same or as through. thank you once again for replying its good to type away my thoughts xxx love lynn
Thank you so much! We are hoping to connect with others that are successfully finding ways to improve the quality of life for their sons.. and working to find a cure! I would be blessed by the information you mentioned. I'll take a look at that link. Thank you again for the welcome!
Hi Ryan. I live in Missoula, MT and I have been struggling to find good doctors to help. The MDA is based in Billings which is about 6 hours from Missoula. They do conduct quarterly clinics in Missoula. My son and I attended 2 of these clinics--they were useful for the Dx but now I am searching for a better option. The last doctor we saw knew far less about current research and care than I do (and I am no expert). I believe I will need to take my son elsewhere to find better help; the Shriners Hospital in Spokane is 4 hours from Missoula and then there is Seattle Childrens Hospital. Any advice you could give would be greatly appreciated.