10-year-old Boy with Ehlers Danlos Inspires Hospital Staff

Toby Skerman has been promoting EDS Awareness in the UK.  This 10-year-old boy who is a patient at Great Ormond Street Hospital has inspired staff to raise funds for his wheelchair.

Nicola Bird (Orchards Manager) and Sharon Pargeter (Nuffield Matron), with items for sale at Nuffield Haywards Heath to raise funds for Toby’s Wheels. Joined by Nuffield staff Lauren Brackpool and Sue Boccia. Pic Steve Robards SUS

By: Mid Sussex Times

Toby has Complex Ehlers-Danlos Syndrome; a genetically inherited connective tissue disorder, which is both disabling and debilitating.

The connective tissues of the body stretch too much, causing instability of the joints, weak unsupportive muscles and internal organ dysfunction.

He also has Autonomic Nervous System Dysfunction and suffers from constant pain and exhaustion.

While there is no cure, Toby has been helped by the Rheumatology Physiotherapy team at Great Ormond Street Hospital

The wheelchair will cost £3,000 and already Toby’s Wheels team has raised £500 by selling hand knitted teddies, homemade jam and books.

toby_1

Their target is to raise £500 per month to buy the wheelchair by Christmas.

Nuffield Matron, Sharon Pargeter, said: “The courage shown by Toby and all his family was an inspiration to all of us as to how to live our lives. We’re determined to reach our target and do hope that everyone in the community will come and support us – and, more importantly, our Toby!”

Nuffield will host a BBQ lunch on Friday August 15 and a Jewellery sale on the 21st. There will be a sponsored walk on Sunday September 14.

 

Toby has a great support system and inspires his caregivers while bringing awareness to Ehlers Danlos Syndrome.

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