A WEYMOUTH dad has spoken about his 18-month-old daughter and how she has coped with a rare neuromuscular condition.
Early last year, parents Aaron Sharp and his partner Becky Greening noticed their daughter five-month-old daughter Marley was not lifting her head up or moving her legs properly.
Mr Sharp and Ms Greening, both from Preston, took their daughter to Dorset County Hospital for test before being referred to Southampton General Hospital and then onto Bristol Children's Hospital, where baby Marley was diagnosed with Spinal Muscular Atrophy (SMA) - a rare neuromuscular condition.
Mr Sharp, 32, said: "She was five months old and she wasn’t lifting her head up or moving her legs.
"We went back and forth to DCH, and then Southampton for blood tests.
"It was revealed she has SMA type one and has low muscle tone. On August 11 last year, we took her to Bristol Children's Hospital, where she was given an infusion, or an injection of Zolgensma."
SMA is a rare condition that damages nerve cells in the brain and spinal cord, while Zolgensma uses harmless, genetically-engineered viruses to increase SMN protein levels. A single injection of Zolgensma (Onasemnogene abeparvovec) into the blood is designed to address the genetic root cause of SMA by replacing the faulty or missing SMN1 gene.
Mr Sharp added: "It was a very emotional and stressful time. Her Co2 levels were above nine, when they're supposed to be around four.
"It was all so raw, especially with the pandemic in the background. We were in Bristol for around three months having weekly blood tests. We were told she might not make it past the age of two, but she's recovering.
"She is now on a ventilator at night-time. She’s done amazing and I'm so proud.
She may not walk with the injection, but it's helping her sit up unaided.
"We've also found out she is the first person in Porset to have it this condition this recent recorded history. It affects one in 10,000 babies."
Marley will next return to Bristol in August, but due to the soaring costs of private treatment - the 18-month-old's uncle Luke Hearn has raised more than £2,000 by completing the Ultra Jurassic Coast Challenge to pay for intense physiotherapy.
A Gofundme page has also been set to reach a target of £10,000 to help pay for private physiotherapy.
For more, visit: www.gofund.me/742754b1
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