Disney dream for dying child

Brian Kerr has Fanconi’s Anaemia and his dying wish is to go to Disneyworld.

His twin sister Helen passed away in 2005 and Brian wants to leave his family with happy memories when he joins her in heaven.

Fundraising is well underway to make Brian’s wish come true.

Brian, who goes to Meadowbridge School in Moira, lives on the Old Kilmore Road with his mum Gaye and brother Adam (10), who is in P7 at Friends.

Fanconi’s Anaemia is a condition which means Brian’s bone marrow has difficulty in making new blood cells. A bone marrow transplant, if successful, would extend Brian’s life, but he doesn’t have a sibling match which is a prerequisite.

His mother Gaye, who is Brian’s full time carer, said: “Adam was able to give Helen a transplant, but Adam and Brian aren’t a match. A transplant doesn’t cure the condition. It would only give him a few extra years.”

When asked how long Brian could live for, Gaye said: “We don’t know - a child who has it at birth can go on to around seven to 10. It’s impossible to say with an illness like this.”

Gaye added: “Some children are diagnosed at around seven, we discovered very early. When Brian was born his arms weren’t fully developed, he had a misshapen kidney lodged in his pelvis and a hole in his heart.

“His sister Helen and brother Adam were the healthy ones. It wasn’t until January 2005 that Helen took ill and we learnt she had developed the very rare condition, HLH.”

Helen received a transplant from her brother Adam in June 2005. Unfortunately eight weeks later she passed away.

Gaye said neither of her children’s terminal diseases were related: “It’s just sheer horrible luck for our family,” she commented.

Of the trials she’s faced, Gaye said: “You have good days and bad days. I think the difference is I’ve fundraised all my life. Whenever I see the crowd gathered for an event for my child I find it hard to take it in.

“It’s times like this you realise who your friends and family are. All my family have offered great support. The fundraising from friends and people we’ve got to know over the years has been amazing.”

Brian is a Manchester United fan and a passionate follower of WWE wrestling.

A few years ago Brian got to meet his hero Rey Mysterio, a meeting which Rey is unlikely to forget.

Gaye explained: “I wrote to the WWE explaining Brian’s condition and asked if it would be possible to meet any of the wrestlers when they came over to the Odyssey. They said they’d send a taxi down to the house and they’d see if they could fix it for him to meet them.

“The night of the wrestling this limo turned up at the house. At the Odyssey Brian got to meet Rey Mysterio. The first thing Brian said to him was, “How do you feel about your friend dying because my sister is in heaven too?””

Rey’s best friend and fellow wrestler Eddie Guerrero died in 2005 of heart failure. The WWE superstar was stopped in his tracks by Brian’s question.

“He lifted Brian up and hugged him and told him he was a very special boy,” recalled Gaye.

Last year Brian shared the People of Courage award for Northern Ireland along with Joshua Fletcher.

Joshua Fletcher is the young Moira lad who was given a new lease of life from a ‘saviour sibling’. Joshua’s parents Joe and Julie made history when they were granted permission to have a tissue-matched baby to help treat Joshua, who had an incurable blood disorder. Their story was featured in several editions of the ‘MAIL’.

Gaye is friends with Joe and Julie and acted as family’s chief fundraiser when they were trying to get enough money to get the pay for the groundbreaking treatment.

Of Brian’s dream trip to Disneyworld, Gaye said: “He’s always wanted to go to Florida. He watches all the rides on the lap top.

“We had Cavalier King Charles spaniels. We thought if we bred them we’d have enough to take the three of us away. Unfortunately because of Brian’s condition, travel insurance meant we couldn’t afford it.That’s when the fundraising started. It’s going absolutely crazy.

“It started off when his school did a sponsored walk, then a Newry girl called Seana Hughes did a dance marathon and raised over 5,000.The people of Cranfield raised 1,800. We’ve caravaned there since we were three. Winkie Armstrong is doing the Lisburn Fun Run and they’re holding a night in the Bauhinia Palace in Moira. At Lark in the Park they lifted nearly 500.”

Gaye estimated that around 14,000 has been raised for Brian Kerr’s Wish Fund.

“Before he became transfusion dependent the insurance was 6 to 8,000,” she said. “The fear now is it’s going to be an awful lot more.”

The eight-year-old was being treated with a male hormone to stimulate his bone marrow to make new blood cells.

Gaye said: “His body has stopped accepting this drug. They’re going to put him on trial drug to see if his bone marrow holds its count or whether it goes down.

“He’s been to theatre and had a bone marrow biopsy done to see why his body isn’t holding the platlets. We should be getting the results on June 18, we can get the insurance updated then.

“As soon as we get the go ahead to go, we’re going.

“When Helen had her wish granted to be a princess for the day in Disneyland Paris, she relapsed before she got to go. She was only in remission for about a week. It happened very quickly.”