A Margate 13-year-old is getting set to complete a climb over the roof of The O2 arena in London via a 380m fabric walkway to raise funds for the Evelina Children’s Heart Organisation (ECHO).
Ursuline student Ashton Howe is taking part in the challenge for ECHO because of the help given to his family after his little brother Marlowe was born with a congenital heart defect.
Marlowe was born in St Thomas’ Hospital on December 16, 2020,and then moved straight to Evelina Children’s Hospital where he spent the next six months.
Parents Shanice Howe and Hayden Coupland found out their baby’s heart was not measuring properly at a 20 week pregnancy scan.
Shanice, 30, said: “We were referred to London for a heart scan and they told me he had a severe and complex heart condition.
“He was born with a congenital heart defect, Pulmonary atresia with ventricular septal defect (VSD).”
Pulmonary atresia means the valve between the heart and lungs is not fully formed. This valve is called the pulmonary valve. Blood can’t flow from the right lower heart chamber to the lungs. In pulmonary atresia with VSD there also is a hole between the two pumping chambers of the heart.
For Marlowe this meant heart surgeries but also a battle with sepsis, two weeks on life support and four months in intensive care.
Shanice said: “We were put in isolation while waiting for Marlowe’s surgery. He got sepsis through a cannula on his groin and was admitted to ICU (intensive care).
“This put a delay on his heart surgery and he was very poorly. On January 19, Marlowe was well enough for his first heart surgery and they repaired his pulmonary atresia ventricular outflow and closed his VSD. But Marlowe became very poorly again and on January 21 they had to take down the VSD patch.
“Marlowe remained very poorly and needed ECMO support (life support), it was all very touch and go.
“On January 27, Marlowe needed a tricuspid valve repair for a leak caused by the ECMO. On February 1, Marlowe was back in theatre for a chest closure.
“Marlowe was in the Evelina for six months with four of those in ICU before he was transferred to Margate for two weeks.”
The little one had to return to Evelina in November 2021 for more heart surgery, including another closure of the hole between the pumping chambers, and then in April 2022 he was scheduled for a balloon catheterization to widen his arteries.
However, it was decided after the pre-op assessment that he would be more at risk having the surgery than not having it.
In August 2022, Marlowe returned to Evelina for a mini button procedure and is currently tube fed via a Flocare infinity pump.
Marlowe, now three-and-a-half years old, has yearly cardiology heart scans to monitor the size of his arteries as they are still small but growing. Genetic testing has revealed a hereditary deletion on chromosome 15q11.2 and the youngster is now waiting for an Autism assessment.
During the time at Evelina the family were supported by ECHO, which is why Ashton is braving the O2 challenge along with other children who either have heart defects or have siblings with the condition.
Shanice said: “The Evelina Children’s Heart Organisation made the hardest moments of our lives more comforting.
“I was in isolation and they would deliver afternoon tea. On Christmas Eve night I heard footsteps and when I opened my eyes Santa was there and left Marlowe a stocking and presents and they brought him little teddies with ECHO t-shirts on.
“We just want to give back. I’m on the Evelina facebook page and they put on a post about (the O2 challenge) and I told Ashton.
“At first he said he wasn’t doing it as it was too high and then he came back and asked what charity it was for,
“When I said Evelina he said they were the ones that helped Marlowe and he was doing it, sign him up. Now he is really eager to do it. He set himself a target of £40 as ECHO had its 40th anniversary or £83 because they began in 1983 but now he has £150 on the fundraising page and another £20 to go to that from his nan.
“I don’t think he’d do it if it wasn’t for charity but he is very fond of helping others, he wants to help everyone.”
Dad Hayden has previously raised more than £1,000 through a sky dive in aid of Ronald McDonald House Charities which also helped the family while Marlowe was in hospital.
Ashton, who loves football and sports, will travel to the O2 with Shanice, Hayden, Marlowe and younger sister Aiyla, on May 29.
He will then go and meet other 11 to 17 years olds taking part in the day of activities organised by ECHO, including the two hour climb, before meeting back up with his family.
ECHO supports children and young people with heart conditions and their families, who have received treatment at the Evelina London Children’s Hospital or at one of the peripheral clinics.