This year for my 32nd birthday I am asking for your help.
As you may know, I am currently a full time, unpaid Carer for our youngest child, Louie.
Louie was born with an incredibly rare chromosomal condition, 17p13.3 Microduplication Syndrome (which is a partial trisomy of the 17th chromosome). This syndrome means he has a myriad of medical issues which require constant treatment and therapies. The incidence of his chromosomal disorder is less than one in one million births ( <1:1000000)
You can see Louies instagram here
He currently qualifies and receives NDIS, but as some may know, this is not enough.
He has had a medical stroller (wheelchair) funded, which is dual usage. The medical seat for the stroller is also the seat in which he sits for food (like a highchair), and also has a rocking base for emotional regulation. This means carrying the chair inside and out every time you need to use it for dinner, going to the park etc.
Currently the constant manual handling of both Louie (who has hypotonia:low tone and weighs 12kg) and the chair, amongst other things, has lead to a painful overuse injury in my wrist.
Whilst researching how I can overcome this injury I found another option for us and Louie which is a pram in which we can place a medical device we already own; the Firefly GoTo seat.
This pram is called the “Firefly WeGo” and folds nicely to fit in the car like a ‘regular’ pram but will give him the support he needs which he currently gets from his medical stroller. It will also fit him for a long time: it is suitable for kids up to 30kg and can be used with or without the additional postural support seat.
View the WeGo here
If we get this pram, it will mean we have a suitable option for on the go which we can leave permanently in the car, and then leave Louie’s other medical seat inside. This will reduce the need for lugging the seat in and out of the car.
Unfortunately, if we want to get the WeGo pram funded through NDIS, the hoops we would need to jump through are many. It could take months and months for approval, and lots of paperwork, therapists reports ($$!) and even then the approval isn’t guaranteed. We need this pram in a timely manner!
This is why I’m asking family and friends who can and would like to help us out, to please donate so we can purchase this pram. The current quoted price is a little over $1600, which seems an awful lot but I’m really hoping we can achieve it.
Thank you for reading this far and thank you if you can donate, no matter how small.
I appreciate it so, so much.
Thanks again from the bottom of my heart.
Ali (& family)
- Frankie & Bowie Stewart
- Troy Ashton
- Kristina Jensen