Help our ‘little miracle’ to have hope
A FAMILY from Lyde Green are asking residents to support a fundraising campaign to help their son after he was diagnosed with an extremely rare condition.
Toni-Louise Worthington and Stephen Hardwell live in Lyde Green with their “little miracle” Oliver, who turns three this month.
Their immediate aim is to buy him a walking aid known as The Innowalk.
The couple have been astounded at the response to their online appeal for funds, which brought in £14,000 in less than a fortnight. But more money will be needed to support Oliver, who has a life-limiting condition, as he grows.
Toni-Louise only discovered the Innowalk in April and was amazed at the difference it made to their son, who is continuing to surprise his family and his doctors with his progress.
“We know Oliver is going to excel because we have hope – we are doing all we can to give him the best life possible,” she said.
Oliver had a difficult birth and subsequently had problems with feeding. Although doctors initially thought he would be fine, at the age of one his parents were concerned that he was not developing properly. A scan picked up that Oliver had a loss on one side of the cerebellum part of his brain, and last December he was diagnosed with Pontocerebellar Hypoplasia Type 6 (PCH6), a neurodegenerative disorder that results in a limited life expectancy.
Since his diagnosis, Oliver has spent time in and out of hospital having tests, and has also suffered from several seizures. Toni-Louise took a career break in January to look after him full time, and he is now under the care of the top neurologist at Bristol Children’s Hospital.
Toni-Louise told the Voice his doctors have never seen a variant like Oliver’s before.
She said: “Variants can be positive or negative, and only a handful of children in the world have PCH6. Since his diagnosis I joined Facebook groups for families with children who have the condition, and there are only two other families in the UK whose children are very very poorly, but with Oliver this is not the case. Although he struggles with mobility, his heart, liver and breathing is fine when normally he should have issues. He is literally a little miracle, and although he continues to make progress, his life is very different from other children his age.”
She told how she discovered the walking device. “At Easter I took Oliver to the Gympanzees pop up centre in Kings Weston, and I put Oliver forward to try The Innowalk. He absolutely loved it, and walked 500m in one session which is unheard of. I asked the organisers where we can get access to one locally, and I was told that families therefore choose to crowd fund for them as there is nothing available on the NHS and they cost £16,000 for the size children his age need.
“By allowing him to move his legs, The Innowalk will mould his hips and prevent from having hip surgery in the future. The health benefits are huge, in terms of head control and building muscle memory, as well as actually helping him to try and walk himself. In June he had an assessment from the company who sell it, and he smiled so much!”
The family set up a Just Giving page and have received donations mainly from family and friends, as well as local businesses.
In support of their fundraising, they have also organised a family fun day at Brislington Junior Football Club on Sunday July 14 .
Toni-Louise said: “I can’t believe how much we’ve been able to raise in just two weeks – four lots of £1000 have come from family which was completely unexpected, friends have done cake sales and donated £100, and friends I’ve not seen for a while have also donated £250 too. We just feel so humbled by everyone’s kindness.
“If we are able to raise additional money for Oliver, while The Innowalk will help him, he does need intense therapy on his core muscles, and we would like to be able to get private physiotherapy for this as there is a long waiting list for NHS appointments. Any money we receive after that will be donated back to the charities that have supported us – Springboard in Clevedon, Gympanzees, Portage and Conductive Education, as we would love to give something back and support other families too.”
The equipment should last until Oliver is eight, and if he needs to move up to the next size then this will cost £26,000, with the adult size costing £36,000.
To find out more about Oliver and support the family’s fundraising, visit their Just Giving page: www.justgiving.com/crowdfunding/myneurohero. To find out more about their family fun day, search for “My Neuro Hero Fun Day” on Facebook.