Pulmonary Arterial Hypertension: Wigan boy battling rare life-limiting disease with help from friends and family

Levi Holgate was diagnosed with Pulmonary Arterial Hypertension when he was 10 months old and various people and organisations - including the youngster’s school, Golborne Primary, are raising money for the charity that supports those affected by the condition.

His parents Lee and Rachel believe it is important to educate people about the degenerative lung condition.

Rachel said: “I never knew what it was before Levi was diagnosed. I try not to think about it too much because it sends you to a dark place.

“When he was born, he had multiple holes in his heart, so we thought he would need surgery for the rest of his life.

“After a lot of investigation they realised the high pressure in his lungs wasn’t down to the holes because they healed themselves, and were able to diagnose

him.

“Initially as parents we were relieved that he didn’t need surgery, but now we realise that would’ve been better, as there are no operations to fix this one. It’s a case of having a shorter life span because your heart needs to work much harder.

“Most people die of heart failure who have this condition, and if it is not caught early most children can only live between seven and 10, but Levi’s was discovered very early, which is more positive for him.”

Despite the condition, Rachel says Levi is like any “typical little four-year-old.

“He runs around everywhere, driving everyone crazy. He’s a happy little boy, apart from when we go on hospital visits. I suppose to him it is frightening lying on the bed and all these people standing over him.

“We can’t explain yet why they are doing this. He’s heartbroken doing it but it is necessary. He hates going to hospital but it’s necessary. Things are going good for him, because every time they go there’s not been any deteritation.”

Approximately one in one million babies are born with Pulmonary Arterial Hypertension, and it currently has no cure.

It is caused when the arteries in the lungs become narrowed, thickened or stiff, meaning the right side of the heart has to work harder to push blood through these narrowed arteries.

During their hospital visits, the family found out about Pulmonary Arterial Hypertension research charity, the Dinosaur Trust, who they have helped to raise money for.

One of the fund-raising activities was organised by family friend Tony Taylor, who did a Tough Mudder in Wrexham, raising funds of over £3,000.

Meanwhile, Golborne Primary School will dedicate a day to the charity and increase understanding about the condition.

This will see all the children donate £1 and wear green T-shirts, with activities including a colouring competition taking place.

Rachel said: “We are really happy for the event to go ahead, but Levi doesn’t understand because he’s so young, so we’ve asked for the focus not to be on him. It’s about the school raising money for the charity and helping to make people more aware.”

Tanja Flintoff, who works for the Dinosaur Trust, says their work is needed in order to help children like Levi.

She said: “This is not classified as a real disease because not enough people have got it, which is crazy. So because it is not in that bracket, it is not funded by the Government, due to it being so rare.

“Everything we do just comes from donations and charity events. It is a lovely charity and does important and groundbreaking new research.

“While I’ve been organising the event at Golborne, I’ve found that Wiganers are so kind. There is a printers who have offered to print out the colouring in competition papers for free, the Wigan Youth Centre and Wigan Little Theatre have offered to give some prizes.”

The Dinosaur Trust was set up by Jamie and Julia Strachan, after one of their children, Archie, was born with pulmonary arterial hypertension.

The name of the trust comes from his love of dinosaurs.

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