Appeal to help darling Dylan fight rare disease

by Sylvia Pownall
Dylan is living with Duchenne Muscular Dystrophy – this is a progressive muscle-wasting disease which will eventually affect his whole body

A Malahide family who relocated to the UK to get treatment for their son have appealed for help to give him the best chance of fighting a rare disease.

Terri Walsh has launched on online fund for her boy, Dylan, who was diagnosed with Duchenne Muscular Dystrophy (DMD) in July last year.

There is currently no cure for the rare disease, and the family closed Dylan’s restaurant in Townyard Lane – named after their young son – and relocated so they could access treatment at Guy’s Hospital in London.

Terri said: “I remember this time so well. I sat in the room with my husband, the consultant and a nurse. I felt physically sick and my heart was racing.

“I struggled to concentrate on anything and I became overwhelmed by shock at the thought of my precious boy having such a cruel disease.

“Shock then turned to grief and days passed wondering how we would piece ourselves back together again. Over time we have become stronger and determined to do our very best for Dylan.”

DMD is a progressive muscle-wasting disease which will eventually affect Dylan’s whole body, starting with his limbs and moving on to his heart and lungs.

Terri said: “He will soon have a life in a wheelchair, with restricted movement. This all seems unimaginable for Dylan, who to most people would appear healthy.

“As a toddler, his walking was delayed and his physical difficulties became more prominent once he started school and was unable to do the same as his peers. Dylan struggles to run, jump, hop, climb and walk up the stairs normally.

“Despite all of this, Dylan is happy. He is handsome, tactile, funny and charming. He loves his family and doesn’t let anything faze him.

“He likes playing computer game Five Nights at Freddys, playing with his plushies and making videos. Dylan’s dream is to be a YouTuber.”

Dylan’s dad continues to live and work in Ireland and frequently travels back and forth to England to be with the rest of the family as his boy receives treatment at Guy’s Hospital.

Terri said: “There is the opportunity for Dylan to participate in clinical trials in the future. This is not available to him in Ireland, and is his only hope of a cure.”

The family hope to raise €100,000 towards future treatment, and so that he can access a range of therapies and medication to prolong his mobility and independence.

To find out more, visit the Determined for Dylan Facebook page, or to donate see https://www.gofundme.com/determinedfordylan

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