In April 2019 we received the heart breaking news that our beautiful Maggie has Juvenile Tay Sachs disease. A regressive genetic Illness which is always fatal and results in gorgeous children progressively losing all of their skills and becoming increasingly unwell until they pass away in late childhood. While we were learning to live with ours girls diagnosis and choosing to make the most of the time we have with her we then tested our other two children Billy and Alice.
In February 2020 we received more devastating news that our gorgeous Billy also has Juvenile Tay Sachs and will also beginto decline like we have seen with Maggie.
Since Maggie’s diagnosis she has lost her ability to talk, to toilet independently, to eat and also now to walk. Maggie has become wheel chair dependent and has seizures everyday.
Billy is starting to have some difficulty with his speaking and is starting to trip oversometimes.
Alice does not have Tay Sachs however faces her own challenges growing up with older siblings who are gradually losing the skills they have developed.
We have been completely overwhelmed at the support and love we have receivedby every body in our lives while we have grappled with our grief. We are also full of gratitude for the beautiful children we have and every day we are given to hold them in our arms.
Every single person we come across haveoffered to support us and the time has come for us to ask for help, even though it is an uncomfortable position to be in!
We need to purchase a car to have modified to enable us to transport two children in wheelchairs! While we are lucky that NDIS will most likely fund the modification we need to buy a new car for them to modify. This is certainly not something we had planned for or expected. We are reaching out and asking for help from anyone who might be in a position to do so.
Any contribution would be incredible and will mean that we will be able to get thecar we need to transport our beautiful family around and keep having adventures and making memories that we will treasure for the rest of our lives! It will also mean that as my children get more unwell I might be in the fortunate position to have some time off work and care for them when they most need their mum and when I most need to be right by their side!
Finally Rory and I want to thank everyone for taking the time to read our story and for always thinking of us! At times when our grief feels almost overwhelming it is the love of our family and friends that picks us up and keeps us going! X
- Ashlee Bennett
- Cathryn Probst
- Emily Cornell
- Alannah McCooke