Annabella needs wheelchair accessible car
Donation protected
Annabella (Bella), who recently turned 5, started having seizures about 3 years ago and was initially diagnosed with epilepsy. For a year her paediatrician tried multiple medications but after her seizures continued to worsen, we went to see a private neurologist.
In April last year, the Neurologist ordered another EEG and an MRI. The MRI showed changes in the white matter in Bella's brain. After further MRI's Annabella was diagnosed with a rare disorder called Leukodystrophy. This is a degenerative disease of the white matter in the brain and when diagnosed in a child gives them on average 5-10 yrs from diagnosis. As this disease progresses Bella will need more and more assistance. Right now, we are at the start of this journey and on a good day she can walk and run and dance. However bad days see her sleeping a lot, having multiple seizures and having to be carried around by either me (Mum) or her Dad.
In the last year we have had assessments done that have shown Bella has low muscle tone and multiple seizures daily, because of this she needs a wheelchair for when we go on outings or when she is just too tired from seizures, eventually she will become wheelchair bound.
Her NDIS plan is going to pay for a wheelchair, but our car is not wheelchair friendly and can't be modified to accommodate one so we need to upgrade. Due to the costs of Bella's ongoing care and multiple hospital stays we have used up our savings and have tried other avenues but are hitting dead ends.
We need to raise $47000 so we can purchase a Kia carnival that NDIS will modify so she can enjoy things like outings with the family, or just going shopping. Annabella will receive her wheelchair in the next couple of months so we are pressed for time to get a new car. Any help you can offer to give her the best possible life would be hugely appreciated by our entire family.
In April last year, the Neurologist ordered another EEG and an MRI. The MRI showed changes in the white matter in Bella's brain. After further MRI's Annabella was diagnosed with a rare disorder called Leukodystrophy. This is a degenerative disease of the white matter in the brain and when diagnosed in a child gives them on average 5-10 yrs from diagnosis. As this disease progresses Bella will need more and more assistance. Right now, we are at the start of this journey and on a good day she can walk and run and dance. However bad days see her sleeping a lot, having multiple seizures and having to be carried around by either me (Mum) or her Dad.
In the last year we have had assessments done that have shown Bella has low muscle tone and multiple seizures daily, because of this she needs a wheelchair for when we go on outings or when she is just too tired from seizures, eventually she will become wheelchair bound.
Her NDIS plan is going to pay for a wheelchair, but our car is not wheelchair friendly and can't be modified to accommodate one so we need to upgrade. Due to the costs of Bella's ongoing care and multiple hospital stays we have used up our savings and have tried other avenues but are hitting dead ends.
We need to raise $47000 so we can purchase a Kia carnival that NDIS will modify so she can enjoy things like outings with the family, or just going shopping. Annabella will receive her wheelchair in the next couple of months so we are pressed for time to get a new car. Any help you can offer to give her the best possible life would be hugely appreciated by our entire family.
Organizer
Naomi Robinson
Organizer
Karingal VIC
