Doting aunt to abseil down Spinnaker Tower to raise money for baby nephew following 'heartbreaking' SMA diagnosis
An adoring aunt is fundraising for her nephew who has a rare and life-limiting disease by abseiling Spinnaker Tower
Chloe Hopwood will harness her bravery on Saturday, April 18 by facing Spinnaker Tower’s 170 metre drop to raise money and awareness for spinal muscular atrophy (SMA) after her nephew, Coby, was diagnosed with the disease at six weeks old.
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Coby was born on May 27, 2025 at QA Hospital, where he spent a stint in intensive care due to a lack of oxygen during birth, before going home with parents, Luke Hopwood and Charlotte Homan, from Portchester.
Chloe, who is Luke’s older sister, said: “We noticed he wasn’t feeding properly and then he was diagnosed with SMA. It’s a rare muscle disease and he was put on medication that wasn’t long term, but more to tide things over until he could have the gene therapy treatment which he had to go to Bristol for in August last year.”
SMA causes progressive muscle wasting and weakness due to the loss of motor neurons, and can result in potential breathing and swallowing problems.
The disease is classified into four types, with Type 1 being the most severe and has been widely publicised over the last few months after Little Mix singer, Jesy Nelson, gave birth to twins with SMA.
Coby was diagnosed with Type 1 SMA, but despite undergoing the gene therapy treatment (Zolgensma), which aims to replace the missing or non-working gene, an assessment revealed his condition is worsening.
The 28-year-old, from Gosport, said: “He’s only got one chance with that. No-one can say what will happen but the gene therapy could have helped prolong his life but they will never be able to bring the muscle movement he has lost back. Now it’s about making him as comfortable as we can and making sure he is able to be included in things like other babies but it is a life-limiting disease.
“It’s heartbreaking because me and Luke lost our dad when we were very young in a road traffic accident. Luke was only three months old and I was two. It’s heartbreaking because Luke wanted to be the father figure he never had by doing things like playing a game of football with him or taking him to watch boxing, but he can’t.
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“It’s heart wrenching not knowing the right things to say knowing you can’t help. As his aunt, I wanted to do something that would support the family. There is nothing you can do to take this away but we want to try our best to help them.”
She explained everyday activities can be “tough” for Charlotte and Luke because Coby is prone to infection meaning simple pleasures such as taking him swimming require them to hire a private pool.
She continued: “I was gobsmacked because of how many people have taken the time to support us through this journey and show their love by donating to such a good cause. I was only expecting to raise a couple of hundred pounds so I’m astounded by how much people have supported us.
“I’ve got butterflies in my stomach thinking about it and I’m really nervous. I’m not scared of heights but I’ve never abseiled before or done anything like this, but knowing that I am doing it for a good cause and to support my family, that is getting me through the nerves.”