Updated: Jun 3, 2021
If there is one thing people quickly learn about the Rare Diseases community, it's the resilience, tenacity and determination to make change and improve the lives of those affected by rare conditions. If something doesn't exist it doesn't mean it's not possible... it means it's an opportunity to create!
That is exactly what one of our rare moms, Dionne Snyders, has done for the benefit of not only her own daughter, Hannah, but all of those affected by Rett Syndrome and other neurological disorders..
"Rett syndrome is a rare genetic neurological disorder that affects girls primarily. Rett syndrome leads to severe impairments which affect nearly every aspect of the child’s life."
"Overseas Rett girls are communicating functionally using the eye gaze technology, some of them are even in mainstream schools. There is one Rett girl who has a job, she is studying, she has a blog and a Facebook page. Its incredible and so inspiring! In South Africa there is not one Rett girl who has been taught to communicate, let along get any form of education." says Snyders.
"They are either sitting at home or sitting in a special school somewhere watching other children paint. Without the ability to use their hands, speak or control their body - there really is not much hope for them here. Hannah, my daughter, was rejected by one school because she cannot follow in a classroom setting and cannot follow commands. She was rejected by another school because she is in a wheel chair."
Dionne has subsequently started her own school for her and other children in the same position which will open in February, called Nova School, which means 'Exploding Star.'
"We are catering for non-verbal children with/without physical disabilities. We will be using a variety of Alternative and Augmentative Communication (AAC) methods throughout the day (high tech and low tech). Every child will be assessed by our multidisciplinary team to establish their Individualized Education Program (IEP). The CAPS curriculum will be adapted for each child."
It does however require structural changes to the area, a sensory room for therapy, equipment and stationery - all of which will require fundraising. Dionne and her team are hosting a virtual run on 13 February to raise funds for Nova, so if anyone would like to join and make a difference while doing it contact Dionne at 074 139 0714 or Dionne.firstname.lastname@example.org with the names of the runners and make a donation to Nova. You will then be sent your race numbers which will be entered into a lucky draw on the day of the run! You can win a week stay at Sanlameer Golf Estate.
On 13 February you run/walk wherever you are, as far as you like! All funds will go to covering the starting costs of Nova.