Matt and Emma Chappell’s son Ollie is aiming to walk 100-metres with the aid of his brother Connor. While that may not sound like a long distance for you and me, this is an incredible feat for this young boy, who is hoping to raise money for two charities close to his family’s heart. Ollie’s dad Matt told Express.co.uk that his son was born healthy with no problems – but in 2017, their world as they knew it changed forever.
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The family were on holiday in 2017, visiting Twinlakes, Sherwood Forest and Fun Farm, when Matt and Emma noticed little Ollie began to slightly limp.
Matt said: “He was having so much fun that we assumed he had bumped his leg.
“The next day we went to Sherwood Forest, again we were having so much fun, but we noticed Ollie was really struggling walking so I spent quite a bit of the time carrying him.
“Myself and my wife decided we would take Ollie to see the family GP the next morning. As we were talking to the GP, he noticed that he was struggling, so we were being referred to a local paediatrician.
“We went home and my wife took Ollie to a soft play area, which then took a drastic turn.
“Ollie was playing and completely lost the ability to use his right side of his body. He was then rushed to QMC, where he was under tests.
“He was sent for a CT scan where they found evidence of a bleed. They needed to get a more detailed look, so they then put Ollie under general anaesthetic to get him into the MRI scanner.
“Ollie was so emotional, he couldn’t tell us what was wrong or describe how he felt. After the tests were run Ollie was diagnosed with Cavernoma in the brainstem.”
READ MORE: Cavernoma definition: What is a cavernoma? What is the treatment?
Oliver and Connor Chappell were inspired by Captain Tom Moore
Ollie was diagnosed with a cavernoma in 2017 – his brother Connor also has the gene
A Cavernoma is a cluster of abnormal blood vessels, usually found in the brain and spinal cord.
The incredibly rare brain disease can cause symptoms such as seizures, neurological problems such as slurred speech and balance problems, haemorrhaging, and even strokes.
His diagnosis hit the family “like a runaway train”, Matt said, and the situation went from bad to worse.
“We thought we had hit a low point watching him struggle after the first haemorrhage, but the second big bleed in 2019 was devastating. We’ve never felt so powerless, it was heart-crushing.
“We all had hit the floor. In Jan 2019 we honestly thought we were going to lose Ollie.
“The moment he woke him from the induced coma, we hugged him so tight.”
Ollie is mainly bound to his wheelchair and Xpander chair now
It’s estimated that one person in every 400,000 in the UK is diagnosed with a cavernoma that has caused symptoms.
The NHS says the condition can sometimes run in families – and Ollie’s mum herself also has a cavernoma.
Matt said: “Ollie needs a lot of care, due to the hemiplegia we have to get him in and out of bed, washed and dressed.
“He is also incontinent so we have to change his pad throughout the day.
“He needs numerous and different types of medication thought out the day starting at 6am and last one at 10pm, these are syringed directly into a feeding tube that goes into his belly.
“Oliver needs a lot of attention, on a 1 to 1 basis. He likes to have the attention as he sometimes feels lonely, spending quite a portion of his time off school and in hospital having treatment.”
Ollie is mainly bound to his wheelchair and Xpander chair now, and he’s only able to walk with the help of his physiotherapist.
But despite all this, Matt describes his son as a “funny” boy and a “little wind-up merchant”. He added: “We have so many funny stories and near-miss awkward situation he has almost got into.
Ollie is a keen gamer and often plays games with his brother
“He is such a stubborn but determined little boy. Obviously he has good and bad days, his stubbornness can also put a lot of pressure on himself and us as a family. It can work both ways.
“As his parents, we were convinced Ollie might never walk again, but this little boy takes it in his stride.
“He was done wonders and still keeps moving forward. He always can put a smile on anyone’s face.”
The brave little boy and his brother and Young Carer Connor, who also has the gene but has not shown any systematic symptoms yet, have been keeping busy in lockdown.
Both love gaming, and “even though Ollie is mainly playing one-handed he is pretty good”, Matt said. “Connor is so proud of being a young carer and has even joined a group provided by local services. Connor really does help, if we need anything while we are with Ollie, he helps all he can.
“Both boys love gaming, even though Ollie does this mainly one-handed, Connor always helps him and takes his time.”
Dad MAtt says the family have relied on charity Cavernoma Aliance UK, which runs a yearly residential
But they’ve also been using their spare time to raise money for two incredible charities close to their heart: the NHS, who saved Oliver’s life in 2017 and again in 2019, and also for Cavernoma Alliance UK (CAUK) who supported their family through the worst.
Oliver is now aiming to walk 100m, with the aid of his brother Connor, to help bring in vital funds for these two amazing charities.
Matt said: “We had seen what Captain Tom Moore had achieved, how he had inspired the nation in a awful situation. We had been wanting to do something for a while.
“We spoke to Ollie and Connor about what we could do. Both boys were very aware of Captain Tom Moore and wanted to do the same.
“Ollie likes the thought of doing important work to help people. So when we thought he would do about two to three walking lengths, he decided to carry on and was so determined to do more.
“Without the CAUK we wouldn’t be where we are now. It is through them myself and wife have counselling, which I struggled to talk about things beforehand.
“CAUK put us in touch with other people and families, the caverfamiles group have been an incredible source of friendship and information. Meeting other dads for me personally has been great, seeing and hearing how they cope, also how families as a whole cope.
“We all meet up on the CAUK caverfamilies yearly residential, which is amazing. It really is a time where we feel ‘normal’, they put on activities for the children and get the parents engaged and learn about Cavernoma and how we can help. It’s been a massive lifeline for us.“
Oliver and Connor Chappell has already raised more than £600
Ollie is walking 100-metres with the help of his brilliant brother Connor
Ollie and his brother Connor have already raised a staggering £620, but the family hope to bring in even more for the causes.
Matt said: “The nurses and Doctors on the E40 ward and the brilliant team in Nottingham QMC were amazing, they saved my son’s life and were incredible in getting him going again.
“I also want to say thanks to the CAUK, they have supported us and helped us every step of our journey.
“We would just like to raise awareness about cavernoma, to raise funds to help families that are in need.
“The caver-no-more effort to push for a cure by 2030 is something I would love to see for filled, but we need to raise funds for research. So to everyone supporting us, thanks again, its means so much to all four of us.”
You can donate to Ollie’s walking challenge here.