‘Our daughter is a fighter and deserves a chance’ – Family of Sheffield baby launch fundraising campaign for lifechanging treatment
The devoted parents of a six-month-old baby from Sheffield have launched a fundraising campaign to help pay for treatment which they say could change her life.
Richard Donson and Fran Topham’s first child Matilda Donson was born premature in February and spent five weeks on the special care baby unit at the Jessop maternity wing before being allowed home.
But the family was devastated last week when the youngster had a series of seizures and she was diagnosed with West syndrome – a rare from of epilepsy – and periventricular leukomalacia, damage to the white matter of the brain which is responsible for movement.
Richard, aged 27, of Gleadless, said: “Everything was looking really good, she was progressing how she should have been until last Sunday when she started having these seizures.
“We went to the doctors and she got admitted to the children’s hospital on the Tuesday and they did an ECG, a scan on her brain and MRI and they told us she had got West syndrome and PVL – it was devastating.”
Matilda was prescribed medication and discharged from hospital on Monday and has not had any further seizures since.
But Richard said the couple had launched the fundraising campaign after being told the condition could affect her mobility and possibly cause cerebral palsy.
He added they also might only be able to get one hour’s worth of physiotherapy per month on the NHS.
Richard said: “There is a place we’ve found in Devon which has been highly recommended called Snowdrop, which provide tailor-made programmes for children with developmental problems to stimulate and enhance abilities.
“It was set up by a dad who studied neuroscience and child development after his son died and other parents have recommended it but it’s all ridiculously expensive.
“There’s the cost of getting to Devon and then the cost of the treatment itself. The first assessment is £400 and £300 per session afterwards and physio can be anything from £50 to £100 an hour.”
The appeal has already seen more than £2,300 pledged in donations and Richard said the support had been ‘incredible’.
He said: “We have been emotionally drained for the past week but the support we’ve had from friends, family and work colleagues has been incredible. We have just got carry on as best we can.
“She has been seizure free for nine days now but it’s one of those things where you are just waiting for it to happen – you just can’t relax.”
Matilda will be back at the hospital for more tests in a few weeks.
Richard added: “All we are trying to do is give her the best possible chance. There’s a lot of uncertainty at the moment but the one thing we're certain about is our daughter is a fighter and deserves a chance.”
Visit www.justgiving.com/crowdfunding/matilda-donson for more information.