Cousin's "heartbreaking" muscle disease inspires paediatrician to fundraise

Sunday 10 February 2019

A local children's doctor has set herself a marathon training challenge between her 16-hour shifts to fundraise for a charity helping her 17-year-old cousin through a "heartbreaking" and "lethal" condition causing his muscles to deteriorate.

Paediatrician Cathy Howden has vowed to tackle London Marathon and the London Landmarks Half Marathon in a bid to raise £3,500 for Action Duchenne, which helps her cousin, Ioan.

He was diagnosed with Duchenne Muscular Dystrophy - a genetic disorder characterised by progressive muscle degeneration and weakness affecting one in 7,000 boys in the UK - when he was just a toddler.

“Of all the conditions I’ve seen as a paediatrician, I think this is one of the most heartbreaking,” Cathy says. “It is a lethal, genetic muscle wasting disease in boys, which first affects mobility, then the heart and respiratory muscles, causing death in early adulthood. Often, there is no family history and the diagnosis comes completely out of the blue.” 

While most boys affected by the condition are bound to a wheelchair by the age of 11, Ioan, who will turn 18 soon, has kept his mobility. “He is always smiling,” Cathy says, “he’s amazing.”

Pictured: Ioan, Cathy's cousin, has been living with Duchenne Muscular Dystrophy for 15 years.

The young boy inspired his cousin not only to become a paediatrician – Cathy was initially planning a career in surgery – but also to tackle long distance running, even though she describes herself as “the worst athlete ever.” 

Cathy first signed up for the Half Marathon, but then Ioan’s mum, Lisa, told her there were still charity spaces for the London Marathon. “I think they only sent it as a laugh, but I thought I am 41 I’m never going to do it again so let’s just do it. I’m only ever doing it for charity not for kicks! I’ll do it this once and never do it again!”

“If Ioan can still walk, when most boys are in a wheelchair by the time they are 11, I can do this,” Cathy adds. “It’s only 26 miles and as hard as it might be, it’s a privilege to be able to do it, because Ioan would dream of doing something like that.”

Pictured: Action Duchenne funds research and clinical trials.

Cathy is hoping her efforts will help raise £3,500 for the Action Duchenne charity, which supports families and their sons with the condition. “The charity helps the boys live lives as fully as possible,” Cathy explained. “Ioan really wants to drive at the moment and they are helping find an accessible car. They also offer psychological support for the whole family.”

Action Duchenne is also funding research and clinical trials, including for gene patching techniques that will enable to stop the development of the condition. “I studied genetics before medicine, and I have to say now is a really exciting time for science. We are at the brink for a cure,” Cathy said. 

“Theoretical approaches I was taught about future potential treatments, are now technically possible, they just need the funding. Without the advances in research and treatment, my cousin wouldn’t have kept his mobility for this long."

Pictured: Cathy Howden with the signed picture donated by Matt Porteous.

The past few weeks have been busy with training for Cathy, who works 16-hour shifts at the hospital. She has been running with two special care nurses, Sarah and Cleo, who are raising funds for The Lilly Foundation and Little Miracles respectively. 

Cathy has also been moving heaven and earth to find ways to raise money. She has set up a Crowdfunding page and organised a black-tie ball at the Ommaroo Hotel. Taking place on 23 February, it will include a raffle with prizes such as a trip to the Ecrehous with Jersey Seafaris, flying lessons, hampers, vouchers and signed photos from Matt Porteous and John Ovenden. Local companies Gamma Aviation and Easenmyne have also supported the event.

“I’ve been overwhelmed by the generosity of people. We have some fantastic prizes.”