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Thursday, 30 October 2014

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Rare blood disorder means Cumbrian youngster has 'to be wrapped in cotton wool'

Bumps and bruises come with the territory as far as two-year-olds are concerned.

Jaydan Scott photo
Jaydan Scott with his sister Millie Hirst, mum Sarah Hirst, dad Dan Scott and grandma Ann Hirst

Little boys and girls generally just love to explore, climb and get into mischief.

But for Carlisle boy Jaydan Scott it’s a different story. His parents simply can’t risk him getting injured and almost literally have to wrap him up in cotton wool.

That’s because Jaydan, who is approaching his second birthday, suffers from a rare form of haemophilia. The genetic condition means his blood doesn’t clot, so if he cuts himself it continues to bleed until he can get hospital treatment.

And if he bumps or bruises himself, the resulting internal bleeding will be severe.

It also affects the joints and muscles and leaves him in a lot of pain. In the long run it is likely he will spend periods of his life in a wheelchair.

There are two types of haemophilia and Jaydan suffers from the most rare, type B. As far as his parents know he is the only child in Cumbria living with this type.

Some haemophiliacs just have reduced levels of clotting proteins in their blood. But Jaydan’s condition is particularly severe because the levels in his blood are zero.

This means that if he has even a small accident, his parents have been told to take him straight across to the Royal Victoria Infirmary in Newcastle to see a specialist.

Jaydan lives at Crossways, Harraby, with his parents Sarah Hirst and Dan Scott, and big sister Millie Hirst, who is soon to turn three.

Mum Sarah explained how he was diagnosed: “After he was born he had the heel prick test, then we noticed some bruising around his ankle.

“I told the health visitor and she said to keep an eye on it. It got worse so we went to the hospital to get it looked at. He had some blood tests and it came back as haemophilia B. It was a big shock.”

Although it is a hereditary condition, there is nobody else in the direct family with haemophilia, so nobody knew there was ant risk.

Grandma Ann Hirst, Sarah’s mum, explained that it must have been hidden through generations of female carriers. “When he was diagnosed they tested Sarah and she was a carrier. It turns out it came from me. But women are only carriers. They can pass it on to their male children.

“I have a son who’s 21 but he hasn’t got it. There’s a 50/50 chance of passing it on. Until Jaydan was born I had no idea it was in our family.”

It may turn out in the future that Jaydan’s sister Millie is also a carrier, and therefore at risk of passing it on if she goes on to have a son.

But for now the family is just focused on Jaydan, and doing everything they can to protect him.

“We are both quite panicky. We have to be really careful about cuts and bangs, which can cause joint bleeds.

“He’s got to be supervised all the time. We’ve got pillows and soft things all over the floor so he can’t hurt himself.

“He still has to sleep in a travel cot. I can’t put him in a wooden one in case he gets his legs and arms stuck and hurts himself,” said Sarah, who cares for him full time.

“Everything is a hazard. Once he’s walking it’s going to be even harder. We are going to have to pad everything.”

Dad Dan added: “We take him swimming. He really enjoys that and it’s really good for his joints.

“But it’s quite sad really. That’s really the only sport he’ll be able to do. There’ll be no football, no rugby. There’s just too much of a risk.”

To date Jaydan has only had one real accident, when he fell and banged his head. They took him straight to hospital, where he was given clotting drugs to help it heal. Because he has absolutely none of the clotting proteins in his blood, there is a chance he could have an allergic reaction to the drug initially.

However, in the long run, once his system is used to it, his parents will be taught how to administer it at home.

In the meantime he is being seen by a specialist team at the Royal Victoria.

Sarah has been supported by the Haemophilia Society, so much so the family is trying to raise money in return.

She has also been in touch with other parents of children with haemophilia B on Facebook, but says she feels isolated living in Cumbria because the condition, which affects about one boy in 30,000 worldwide, is so rare.

“We don’t know if there are any others in Carlisle, or even Cumbria, with haemophilia B. There might be.

“It would be nice to know if there were. It would be nice to speak to someone who understands,” said Sarah.

Recently she has also discovered Cumbria Carers, who are now providing support to the family – including helping her to get funding for a protective helmet for Jaydan.

But Ann said a lot of people don’t understand how difficult it is for Sarah and Dan: “Personally, I don’t think they’ve had enough support since he was diagnosed. It’s been really difficult and to be honest it makes me really angry. It’s a full-time job. We can help but can only do so much.”

An emotional Sarah added: “I’m just glad I’ve got Dan. Without him it would have been a real struggle. If it wasn’t for him and our families I don’t know how I’d have coped really.”

But things are taking a positive turn, with the couple due to marry in June.

And the family are also trying to turn Jaydan’s condition into a positive, using it to raise awareness of haemophilia and raise funds.

Today, to mark World Haemophilia Day, they are holding a tea party for friends and family. They are also putting Haemophilia Society collection boxes into local shops and selling wristbands for the national charity.

In the long term, they don’t know exactly how much Jaydan’s condition will affect him so they are preparing for every eventuality. As well as the constant threat of injury, it’s likely he will have severe joint pain and future mobility issues.

He will also need to use a wheelchair, at least part of the time, but on the plus side his parents have been told he can attend a mainstream school with extra support.

Right now, though, his mum is looking at how they can toddler-proof their home to prevent any injuries as he learns to walk and climb. She is appealing to any soft play centres or individuals who have padded items they do not need to get in touch.

Inherited condition

  • Haemophilia is an inherited condition that affects the blood’s ability to clot. There is no cure but it can be treated to an extent
  • The condition is passed to a child by one or both of their parents. The chances of passing it to a son if the mother is a carrier is about 50 per cent
  • It mainly affects boys, with females only becoming carriers. However, female carriers can have some symptoms, such as heavy periods. In rare circumstances girls can be born with it, but only if both parents carry the gene
  • Symptoms can be mild to severe depending on the individual and levels of clotting proteins in their blood. They include bleeding that doesn’t stop, internal bleeding and severe joint pain
  • There are about 6,000 people in the UK with haemophilia. One in 5,000 boys will be born with haemophilia A, while one in 30,000 will be born with the more rare type B

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