Leeds family's joy after two-year battle to keep son with rare disease alive

Clare Chapman with Finley.'Photo: James Hardisty
Clare Chapman with Finley.'Photo: James Hardisty
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The mum of a Leeds boy born with a rare disease that meant he choked on every meal has  told how it was a "constant battle" to keep him alive for more than two years.

Finley Chapman of Pudsey was aged two-and-a-half before it was discovered an intolerance to dairy was the trigger for a rare allergic disorder that meant he could not swallow food properly.

Finley Chapman'Photo: James Hardisty

Finley Chapman'Photo: James Hardisty

Finley's health improved overnight after dairy was removed from his diet and his parents Clare and Carl - both aged 39 - finally had the answer they had been searching for.

Mrs Chapman said Finley - who is now a happy and healthy four-year-old - was "born poorly" and spent the first two weeks of his life on the special care baby unit at Leeds Children's Hospital.

He was underweight, had difficulty breathing and eating, but doctors could not identify the problem.

Finley was in and out of hospital and underwent two exploratory operations aged two after suffering repeated chest infections and numerous bouts of pneumonia.

Finley Chapman with some of the advent calendars people have donated for Leeds Children's Hospital.'Photo: James Hardisty.

Finley Chapman with some of the advent calendars people have donated for Leeds Children's Hospital.'Photo: James Hardisty.

Finley choked on every meal and was rushed to hospital by ambulance on three occasions.

On one occasion he was choking so badly he stopped breathing and had to be resuscitated by paramedics.

Despite extensive tests for cystic fibrosis, diabetes and thyroid problems, Finley's symptoms got worse.

Mrs Chapman said it wasn't until Finley was aged two-and-a-half that he was finally diagnosed with eosinophilic esophagitis (EoE) - an allergic disorder that causes inflammation of the oesophagus.

Clare and Carl Chapman are pictured with sons  Finley (right) and Austin.'Photo: James Hardisty

Clare and Carl Chapman are pictured with sons Finley (right) and Austin.'Photo: James Hardisty

Finley was intolerant to dairy foods and the condition led to swallowing problems, vomiting and poor weight gain.

Mrs Chapman said: "Everything fell into place at that point and we finally had the answer we had been searching for.

"We just felt really happy and relieved that we knew what was wrong and how to fix it.

"His illness is due to food intolerance and in his case it is dairy that is the trigger.

"We were advised to remove it from his diet and overnight he started to get better and has gone from strength to strength since."

Finley, who has a two-year-old brother called Austin, can now eat solid foods and still has to be fed liquids via a tube in his stomach, but his swallowing is improving and it is hoped the tube will be removed in the next few years.

Mrs Chapman said: "Before the diagnosis it was a constant battle. We had to take him to the doctors every week."

He would constantly choke on food and drink at each meal, daily for two-and-a-half-years.

"It was awful. We just worried at every meal. We never ate out because we just knew that every meal was going to be a struggle.

"The doctors and nurses don't know how we managed to keep him alive for so long.

She added: "He is the happiest little boy you could ever meet, he is brilliant He doesn't know any different so he doesn't know that this is not normal."

Mrs Chapman, said: "EoE is still a relatively unknown and understood condition and many GPs are not aware of.

"We would encourage any other parents of children with similar symptoms to see their GP and explain their concerns.

"The only way to diagnose it is with a biopsy of the oesophagus via an endoscopy.

Mrs Chapman, who runs online company Balloon Bear, which provides balloons for events and parties, is crowdfunding via gofundme to buy advent calendars for youngsters staying at Leeds Children's Hospital over Christmas.

She said: "Finley spent so much time in hospital over the festive period we wanted to do something for those children who will be in this year as we know how hard it is to be ill over Christmas. He will be enjoying his advent calendar this year, but it will be dairy free!"

Mrs Chapman said more than 500 advent calendars have now been donated and she is asking for cash donations to the gofundme page to buy toys and gifts for children in hospital over Christmas.