A NINE-year-old boy battling a rare disorder affecting just 200 people across the globe is flying to America every single month in the hope of improving his quality of life.
Max Edwards, nine, suffers from Proteus Syndrome - an disorder that causes the disproportionate overgrowth of bones, skin and tissue often resulting in serve deformities, seizures and visions problems.
Following his diagnosis in October, Max's parents managed to secure him a potentially life-changing spot in a experimental drug trial in America - but the youngster has to make the gruelling the states every single month.
The stress of the ordeal has even led to Max, from Southend, suffering with alopecia but the family remain confident it could finally lead to success.
Max’s mum, Amy said: “Max has developed alopecia as a result of all of the stress of this on him, as a nine-year-old, the psychological impact has been immense.
“He has no hair or eyelashes and the impact of that has been quite profound at the kind of age where you really care about appearance.
“Max has been travelling to America since February, which has been very tiring and taxing but the drug company do cover some of the costs of the flights and accommodation, they pay for one parent so we can’t afford to both go each time.”
To challenge himself and donate to the Proteus Syndrome Foundation charity, Max’s dad, Ben, will be running the 42.19-kilometre Amsterdam marathon to support his son and others affected by the condition.
Amy added: “I am so proud of Max, we always call Max our “little trooper”, he faces all these things head on.
“He lets the doctors prod and poke at him, he does not complain.”
After suffering repeated health issues, Max was initially diagnosed by doctors at Great Ormond Street Children’s Hospital, following a biopsy test.
“It was a big decision for us to make, to go out to the US for treatment. Max misses a lot of school as a result and we also have a three-year-old, it is very tiring.”
To donate, visit: https://www.justgiving.com/page/a-phillips-1710353616880?
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here