Steph’s story:
How the Yahoo Health group started in 2002.
Stephanie, Jim, Chris and Jason Volpe
Holbrook, New York, USA
Countless doctors had explained to us that we have an extremely rare disorder called NAIT. They explained most of the details and told us to not have any more children. Take our newborn home and love him (and basically wait for him to die).
A year later and a shockingly healthy one year old, got me thinking About how wrong they were with Chris’ prognosis. Not only did he hit his milestones, he walked one week before his first birthday. What else were they wrong About? Are there more freaks like me out there who have this ‘very very rare’ and ‘extremely rare’ condition? Could the doctors have been wrong?
So I started the yahoo support group in 2002 looking for people like me who had this or even something similar. I even trolled other support groups for children with brain damage to see if anyone had something similar happen. For months no one responded. I would religiously check the group with an occasional message telling people I was still there. Suddenly I found someone from Australia on a pediatric stroke email list. Her child had an ICH from NAIT! I could not believe it. I told her About my attempted support group (that no one had found yet) and she and I would chat through email. She did join the group but we never really spoke on there.
Then someone found the group for real this time and eventually more and more parents trickled in. All desperate like me for information but also for much needed support. They were looking for someone who has been through what they have. Immediately the board was filled with conversation. We started to realize that NAIT is much more common than most doctors lead us to believe. The problem wasn’t NAIT’s rarity but the fact that the DOCTORS where unaware of it. Yes it is rare but there is treatment and people can have healthy babies with treatment!
By now the board had a life of its own and it was doing exactly what I needed so badly. It connected all of us NAIT families and gave us the information we needed to bring back to our doctors to start a dialogue.
Personally it gave me the strength and courage to have another child. Our family was so terrified from what happened to Chris we would have never considered having another if it was not for the wonderful support I received from this group. I have said this a million times it has helped me so much more than I could have ever dreamed of. The people on this support group are the reason I was able to have Jason in 2008.
I am proud to say because of this group babies have been born healthy and for those of us who were not so lucky and have experienced children with brain bleeds we have found support beyond belief. I have made friends I will have for life who know EXACTLY what I went through. This was my goal and it is a dream come true.
Stephanie
NAIT Support Group
http://health.groups.yahoo.com/group/NAIT/