mps type 3/sanfilippo syndrome

[mum_of_5]

thanks girls i will askon wednesday about support groups
i had never heard of it either but after reading its upset me so much it was saying kids have a life span of late teens/mid 20's i dont want to lose my babies

[HotI]

There is heaps of research going on into metabolic conditions, and your babies will see the benefits of the research in their lives. Good luck for Wednesday. Take pen and paper so you can write down notes, and a list of any questions you have.

take care

[surprised]

How did you go today hun? Big hugs xoxoxo

[Calluna]

Oh hun, I'm so sorry you and your babies are going through this.

A hug seems so insignificant but it's all I have. Please know I'm thinking of you.

[Caz_88]

Hi Mum-of-5,

I'm so sorry that you and your gorgeous babies have to go through this
I really dont have any personal experience with MPS III, but I'm doing my last year of a Biomedical Science Degree.... I think I heard MPS III research mentioned last year in metabolic diseases (talking about novel therapies etc). I'm pretty sure that they are beginning a gene therapy trial for MPSIII type A soon (next year or so) but I think it is in France. Still, maybe this is something that you could look into, and if nothing else I hope it gives you some more hope.

Again, I cant give you and you babies enough