Nelle – Wheelchair
Nelle is a happy 4 year old girl who enjoys time with her older sister, watching her dog and giggling at push and pull toys. Nelle has a diagnosis of Cohen Syndrome, an extremely rare inherited genetic disorder. Children with Cohen syndrome have Global Developmental Delay, cognitive delay, small head size and weak muscle tone. Nelle moves via crawling and uses a standing frame to provide her with standing opportunities for bone density and hip development. She wears a Second Skin and foot orthodoses for support.
It was intended that as Nelle transitioned to kindergarten this year, she would be able to use a walker, however due to her regressed sensory and delayed gross motor skills this will not be a safe or viable option. Nelle’s sensory sensitivity means she is resisting weight bearing and standing on her feet. She is now only crawling on her knees and is becoming upset touching the ground. This limits her exploration, access to the environment and learning development. Nelle urgently requires a wheelchair to access the kinder learning environment and curriculum. She will then be at the same level as her peers which allows access to table tops for play and meal times. It also allows others to approach and engage with her. A wheelchair will ensure her safety and participation in all environments can be maximized.
The family are very stressed and financially looking at ways of managing Nelle’s ongoing needs. It is hoped the roll out of the National Disability Insurance Scheme will mean that they will be able to meet her ongoing equipment needs and home modifications required to provide her with access to her home. In the meantime the family have been funding the thousands of dollars that are associated with caring for Nelle.
This is just amazing. It is going to make such a difference to Nelle and her family. Please pass on our thanks and once it arrives will be send some photos and let you know how it is going.
Thank you again. MAD Foundation really is amazing.
Diane, Early Intervention Worker & Occupational Therapist