A County Durham couple have turned a run-down "banger" into a Toy Story-themed dream car that they're then set to drive across Europe to raise cash for a tot with an extremely rare genetic disease.
Houghton-le-Spring's Noah Stubbs, 3, is thought to be the only child in Britain to have the condition called Gemin5. It is a global disorder that affects motor skills and mobility. Though he is a happy little boy, he is non-verbal and his balance is a particular issue.
There are understood to be around 15 people worldwide with the condition. Noah's condition makes life tough for him and he requires a range of adapted and protective equipment. To help fund this, Irene and Paul Reid - friends of his grandmother Michelle Rose-McCaffery - are driving the old car thousands of miles across Europe as part of the Benidorm or Bust rally.
Read more: Charity boss on 'concerning' rise in mental health crisis referrals amid cost of living pressures
Noah falls and hurts himself easily, so the fundraiser is especially looking to raise cash to pay for protective kit, and to help create a safe garden for him to play in. In future, he will also likely need to visit the US where the only specialist dealing with this condition is based. The hope is this will help support mum Bethany with some of the necessary costs that will come in Noah's future.
As such, Paul and Irene are looking to raise £10,000. They're soon to set out for Benidorm - the long way! Irene told ChronicleLive about the trip, which will see them cross the Pyrenees by road.
She said: "We had to buy what is classed as a banger for under £500 and now we've made sure it's roadworthy and safe to get us to Benidorm. We are one of I believe around 42 entries this year. We are theming our entry around Toy Story.
"As the little lad Noah we are doing this in aid of is Toy Story daft! We are doing it to raise funds for Noah who has the rare genetic disease Gemin5. It's thought he's the only one in the country with it and not much at all is known about it."
Noah's grandma Michelle added: "There's no known cure currently. It's a genetic disorder and Noah is the only known person in the UK. There are only about 15 families worldwide. Noah is non-verbal. His main issue is balance and mobility. He can walk but he needs his hand held. We just have to see how it goes."
She explained that because the condition was so rare, even the doctors treating him had found it complex to provide the support Noah will need. A key issue at the moment is that Noah requires a protective helmet, but the one suggested by the NHS is too heavy for his needs.
Michelle added: "He loves to cook with me, but he has to have a little step and he's always in danger of falling off. He's really such a happy lad, if you get the thumbs up from him you are set for life.
"For now, we know for sure that the garden's going to be a massive thing. He loves to be in the outdoors."
READ NEXT:
- Join ChronicleLive's WhatsApp community for breaking news and top stories
- Newcastle mental health wards 'not fit for purpose' warns regulator as NHS trust told it must improve
- Racism towards Newcastle Hospitals staff increasing from patients - and their own colleagues
- Lying doctor struck off again after applying for North East jobs without disclosing 18-year suspension
- Royal Victoria Infirmary maternity services rated 'requires improvement' as CQC highlights outdated equipment and safety fears
