Southend boy with Proteus syndrome improving with US trial

Max Edwards suffers from proteus syndrome - a disorder causing the disproportionate overgrowth of bones, skin and tissue often resulting in severe deformities, seizures and vision problems.

Since his diagnosis last October, Max has been on an experimental drug trial in Washington DC that has forced him to make gruelling monthly trips, an ordeal that has caused him to develop alopecia.

Happy - Max Edwards (Image: Amy Edwards) DC - Max in Washington DC (Image: Amy Edwards)

However, six months into the trial, Max has experienced an improvement in the pain he deals with on a daily basis and a significant growth on his foot has “begun to ease”.

Mum, Amy Edwards, said: “Day to day, he is in less pain and that really makes you feel like the trips have been worth it.

“We had a party to celebrate him getting through the first six months of the trial, the first six months are always the hardest and in the new year, his appointments will be easing.

Marathon - Amy and Ben in Amsterdam (Image: Amy Edwards)

“He has flown every month and the last visit he had, he had a conference, there were other children with proteus syndrome, and we got them together to try and make them friendships.

“You don’t often get to meet others with this syndrome, and I think he enjoyed it, it was a bit overwhelming, but I am glad we went.”

Amy added that on Sunday, Max’s dad Ben ran the Amsterdam Marathon to encourage and support his son, raising £5,000 for the Proteus Syndrome Foundation, completing the 42.19 kilometre run in four hours and 29 minutes.

While Max was unable to attend, he “cheered from home”, with Amy’s uncle, Daren Phillips also running for support.

Amy added: “It was really good, I am so proud of both of them, it was Ben’s first marathon, and he absolutely smashed the time, it was amazing.

“As a family we are so thankful for everyone’s gracious donations, we have experienced firsthand how that can benefit families.”