Battle to reduce boy’s facial growth

WHEN Stephen Pegler-Loach was born with a “little purple bruise” on his cheek, doctors initially dismissed it as nothing more than a birthmark.

But in the years that followed the mark would get bigger and bigger until it was eventually covering his entire right cheek and part of his eye.

It was discovered that the child had a rare condition in which the veins and blood vessels in his face grow in a similar way to a tumour.

“The vascular malformation was found to be both external and internal,” said his dad Adam Loach.

“It covers the whole side of his face and penetrates through to the inside of his mouth and towards the back of his throat.

“It also travels up to his scalp and in and around his eye socket. This has caused deformity to his teeth and has made eating and drinking difficult, as well as affecting his speech.

“The malformation also caused a growth to form and protrude from his lower eyelid which had a big impact on his vision and ability to focus.

“This also spread down his nasal passage, causing problems with his airways.”

At the age of six, Stephen was put forward for a surgical treatment known as a sclerotherapy. It involves being sedated and having a toxin injected into the malformation at different points to kill off the affected veins and muscles.

Adam, 42, added: “There are risk factors involved with this procedure which include kidney failure, blindness – if the toxins go too near the eye – and infection. On top of this, the pain and physical impact on Stephen are very severe.”

Due to the risk of blindness, the toxins are unable to be injected into the mass on his lower eyelid.

So, at the age of eight, he went under the knife to remove as much of the growth as possible.

Adam added: “The mass was causing his eyelid to invert which was pushing his eyelashes under his eye and causing ulceration.”

Despite having numerous procedures, doctors warned Adam and his family that Stephen’s mass would always grow back.

However, they said the toxins were far too dangerous to administer for much longer.

“The toxins used are not something that a person should be exposed to very often,” added Adam.

“They also told us that if and when the growth under his eye was to return, the surgery to remove them could only be done a limited number of times due to the nerves in his eyelid being damaged as a result of the surgery.”

During his early school years in Birmingham, Stephen was badly bullied and called a “freak” by his classmates.

“It got so bad that I had to pull him out of school so he could be taught at home,” added Adam.

Following a holiday together in Brecon, the family made the decision to move to Wales and settle in Dunvant, Swansea, in May 2018.

“It’s a complete contrast in Wales. We really feel at home here and his peers in school have really accepted him and taken him under their wing,” said Adam.

As Stephen approaches his 12th birthday in January, his growth has now sadly returned.

However, due to funding cuts his procedures are only available at the Royal Marsden Hospital in London.

“This is going to be extremely difficult for us as only one of his parents drives and we also have five children at home,” said Adam. “The malformation will now likely come back more severely than before as Stephen is reaching puberty.”

■ A GoFundMe page has been set up to buy a motor home so the family can travel and stay near to where Stephen needs his treatment. To donate go to www.gofund me.com/f/help-for-a-very-brave-boy