Special party for special Kier, 12

Kier Dent of Little Harrowden with Ashleigh Butler and Pudsey
Kier Dent of Little Harrowden with Ashleigh Butler and Pudsey

It was smiles all round at a surprise party held for a youngster with a rare condition which only affects about 200 people in the world.

Kier Dent, 12, has Chediak Higashi Syndrome, a rare disease affecting the immune and nervous systems.

He needed a bone marrow transplant and after a suitable donor was found in America, Kier went into hospital for the operation last year.

But this left him very poorly and while he should have left Little Harrowden Primary School last July and started at Sir Christopher Hatton Academy in September, he had to have months off school.

He missed all the end-of-school parties and performances, so a group of mums teamed up to organise a surprise party for him with classmates, teachers and support workers as well as family and friends.

Not only was it a celebration of his return to school but also a fundraiser for Great Ormond Street Hospital, where Kier has had much of his treatment.

Kier’s mum Sharon Hansell said: “They said they wanted to have a surprise party for Kier as he had missed so much time from school.

“It was a complete surprise, we didn’t tell Kier. We just said it was a friend’s birthday party.

“It was really overwhelming, he was really emotional. They sang The Script’s Hall Of Fame for him, it was lovely.

“Our friends and family were there, and we had Ashleigh and Pudsey there.

“He loves dogs so to have them there was fantastic.”

Kier’s immune system is much stronger now because of the transplant, but he has spent many months in hospital.

Miss Hansell said: “When you have a bone marrow transplant, you are in isolation.

“If Kier had some pens or pencils to draw or board games in Great Ormond Street, they couldn’t be given to other children because of the risk of infection.

“The money they get keeps the children entertained when they are in there so I wanted the money to go to that ward.

“During the bone marrow transplant Kier was in there for nine-and-a-half weeks. Previous to that it was seven weeks and before that it was 10 days.”

She added: “Kier has been amazing, he still managed to smile every day, but he did get very poorly, especially during the chemotherapy.

“It wiped him out completely. But we are so proud of him with all that he has been through.”

Doctors can’t guarantee Kier won’t need another transplant at some point, but he is recovering well and it is hoped he can return full-time to school after Easter.

Kier will be on medication for the rest of his life and he has to wear sunblock even on dull days due to the condition making him sensitive to light. He also has a completely different blood group due to the transplant.

His mum said: “It’s a very rare illness, there’s only about 200 other people in the world with it. But now he has a new bone marrow, which came from a 46-year-old man in America.

“We received a card from him and I sent one back, but what do you write to someone who saved your son’s life?”

The family must wait two years before they can find out the identity of the donor, but for now they are thrilled to give something back to the hospital.

Sharon said: “We are so lucky to have such a great group of friends that have helped us through the dark days and helped to put an amazing smile on Kier’s face at the party.

“Great Ormond Street is just a fantastic hospital and we can’t thank them enough for all they have done.”

Cash boost for London hospital

Keely Smith helped organise the party at Little Harrowden Village Hall last month.

She said: “The party was absolutely amazing.

“We raised some £400 for Great Ormond Street Hospital and Kier had a ball.

“Ashleigh and Pudsey, along with Ashleigh’s new dog, Sullivan, were just fantastic.”

Kier’s mum Sharon Hansell said: “There was so much food and drink left at the party so we took it to the Daylight Centre in Wellingborough.

“It was amazing, not just to do the party but to raise money for Great Ormond Street.”