Abigail – Customised Wheelchair Support

Abigail is an 11-year-old girl living with Sanfilippo Syndrome. This rare genetic condition causes progressive loss of function over time.

Her family recently moved to Australia from India. They are living here under her father’s working visa. Because of their visa status, Abigail cannot access NDIS support.

Over recent months, Abigail’s condition has declined significantly. She can no longer communicate or move independently. Abigail also has significant feeding difficulties. Her family provides full support with movement, positioning and daily care.

Abigail’s family cares for her lovingly at home. However, they needed urgent help to keep her safe, comfortable and well supported.

MAD helped fund the specialised parts and occupational therapy support needed to customise a re-issued wheelchair for Abigail.

The customised wheelchair now helps Abigail sit safely and comfortably. It also gives her better head and postural support. Her family can now access the community more easily. Abigail can also travel safely to school.

From her therapy team

“Abigail is now using the wheelchair which was generously funded through the MAD foundation. It fits her beautifully with thanks to Sam/OT who has kindly supported the family through this process.

The customised wheelchair has made such a difference to Abigail and her family.  The ability to be seated safely and comfortably has enabled the family access the community more easily and to be safely transported in the bus to attend school.

Now that she is in a customised wheelchair she is able to sit with her head in an upright position and we can now see her gorgeous face and smile.

Thanks again for your generous support!”

— Sarah Raspin, Senior Occupational Therapist, Victorian Paediatric Palliative Care Program, The Royal Children’s Hospital

“Abigail has been thoroughly enjoying her new seating system. She is now comfortably positioned and well supported, which has made a significant difference in her daily life.

Her parents have expressed their immense gratitude to Sarah and Andrea, as well as to the MAD Foundation, for making this possible. We know that this would not have been achievable without Sarah’s dedicated work and the funding provided by the MAD Foundation.

Thank you all very much.”

— Sam Samson, Occupational Therapist, Enabling Steps