INTERNATIONAL WAGR SYNDROME ASSOCIATION
June 29, 2011
My 10yo daughter has WAGR syndrome and because she was diagnosed pre-natally I was fortunate to have had the support of the IWSA from day one. Being such a rare syndrome, I've found the knowledge of the board to be invaluable in raising my daughter, both in medical and emotional terms. I doubt anyone could understand this until they've walked in my shoes. Living in Australia we are somewhat isolated, this makes connecting with other families virtually impossible. The IWSA ensures all families are kept "in the loop" at all times regardless of distance, ethnical or language barriers. I find this very comforting as despite our kids all being alike, so too are they all very different, so I am able to connect, share and compare various traits with a multitude of children from around the world. At the age of two when my daughter was in hospital to undergo a partial nephrectomy to remove a tumour, she recieved an unexpected gift from the IWSA which was welcomed with joy at a time when we had little to smile about. To know others who "get it" are thinking of us is so profound. Our family and friends of course were thinking of us too, but I doubt they totally understood exactly how we were feeling. The IWSA did, and always will.
I've personally experienced the results of this organization in...
Information recieved (research, educational, therapuetic, health, behavioural issues, low-vision related), worries and concerns shared and alleviated, gift recieved, financial assistance offered should I require for travel to meet other families at the WAGR weekend, shoulder to cry on, ear to vent to, non judgemental advice and support.
Ways to make it better...
If I had to make changes to this organization, I would...
I am not aware of any changes which would benefit this organisation.
Client Served & Mother of child with WAGR syndrome.