It is so depressing how little support there is for Gaucher’s Disease type 2 and type 3. Seriously.
I have only been able to find about a dozen other families who have had children with GD2 or GD3. Sadly, most of their children have already passed away. I can think of maybe 4 other families that I have been in contact with who are still fighting this disease. Four — in the entire internet, and you know I have tried!
I have so many questions I want ask other parents who are going through this or have gone through it. There aren’t even enough families yet to create a mailing list or message board.
I have found other message boards and mailing lists for other rare diseases. Even though they aren’t hugely active, there are enough members to at least have questions answered and get a few opinions. Not for GD2 and GD3.
I really do feel alone in this…
I am so sorry you feel alone! I wish I could give you a great big hug! Sadie and I stop in frequently! She loves to look at baby Hannah! You are in my prayers! ((((((BIG HUG)))))))
Jo’s last blog post..Santa Visited Me Yesterday!!
I am so sorry that you feel so alone. And I know that you are scared. But even though some of the families you have connected with do not have a child with Gaucher’s disease, we are still here for you. You should be so proud of all the hard work you are doing to help Hannah and other children like her. You are an inspiration. Hugs to you and Hannah.
Rachelle’s last blog post..Happy Retirement Mom!
It’s a good news bad news thing. You don’t want other children and families to have this, but if more had it there would be more awareness and more research and more support and more help. {hugs}
I am totally with you on the feeling so alone out there!! I have found zero families with ALPS-let alone ALPS “like”-and I have been looking for almost 11 months now. You know how to reach me if you need/want to talk. 🙂
I’m so sorry that you feel so alone in this. I think you have a lot of support and love though. We may not have a child with Gaucher’s, but we’re here for you. We pray for Hannah and we are ready to do whatever we can.