HEARTBREAKING tributes have been paid to a ‘beautiful little angel’ who died just ten days after his first birthday after battling a rare genetic disease which affects just one in 50,000 people.
Arlo-Jack Burton was born on November 22 last year but his parents, 17-year-old Shanie Burton and 19-year-old Ben Wray, almost immediately started to encounter a number of issues.
Shanie told the Chronicle: “The doctors were running tests on him when he was born but nothing really came back from them.
“At around one or two months old I thought that Arlo was having seizures so we took him to hospital where they told us that he was having convulsions.
“A couple of more months passed and he started having seizures again which is when we took him back to Barnsley Hospital to tell them something wasn’t right.
“We were sent to Sheffield Children’s Hospital where they ran some more tests and took blood from myself and his dad to test for any genetic disorders.”
Arlo was then diagnosed with Zellweger syndrome, a disorder which is passed from parents to children.
It disrupts cellular function and causes serious problems soon after birth.
Children also develop life-threatening problems in other organs and tissues, such as the liver, heart, and kidneys, and their liver or spleen may be enlarged.
Shanie wants to highlight the syndrome so more people can be aware of the devastating affects.
“We are really wanting to highlight this disorder as no-one really knows about it,” she said.
“It’s a very heartbreaking thing to happen and I don’t wish it upon anyone.”
Arlo lost his battle with the disease just ten days after his first birthday, leaving the family heartbroken - but Shanie admits it was really just a matter of time.
“After lots of hospital trips, home visits and constantly being told that he was deteriorating - we were preparing for the worst as a family,” she said.
“Then on December 2 at 6.45pm, Arlo sadly grew his wings.
“It’s absolutely heartbreaking for us.
“We were told that wouldn’t even make it to his first birthday so we knew that it was eventually going to happen.”
A fundraiser has been set up to give Arlo the send-off he deserves, with almost £1,000 raised so far.
Shanie said she has been overwhelmed by the support she received - and any additional funds raised will be handed over to Barnsley Hospital.
Arlo’s funeral will be held at Bolton-upon-Dearne Cemetery on Tuesday at 11.30pm - and Shanie has put forward a baby blue theme for all those in attendance.
A balloon release is also set to take place on the day.
Shanie’s friends and family, who attend Barnsley FC games, are also planning a minute’s applause at tomorrow’s League One fixture against Charlton Athletic.
“Arlo was such a strong boy and he did everybody so proud,” she said.
“He deserves the best send-off possible.
“To know how many people are actually here for us as a family it’s heart-warming and shows that there are caring people around in this generation.
“If there’s any money left from the donations then we will be ending that over to the children’s ward at Barnsley Hospital.
“They have been amazing all the way through.”
