Heartbreaking story of leukaemia ‘guinea pig’ children confined to isolation rooms – Mirror Online

Every day ended the same way. Alan Corley kissed his father good night through a pane of glass, then retreated to his hospital bed clinging to his Mr Happy toy for comfort.

Diagnosed with leukaemia when he was five years old, Alan was confined to a cell like isolation room at Westminster Childrens Hospital as the slightest cold or infection could prove fatal.

Dad Andy even had to put on a gown, face mask, and rubber gloves before he could enter. Alans one other friend was the little boy in the next isolation room. That boy was Anthony Nolan.

Despite a global hunt for a bone marrow donor to cure Anthonys rare genetic condition, Wiskott-Aldrich syndrome, he died on October 21, 1979. He was seven-years-old.

His mum Shirleys tireless efforts to save him led to the creation of the bone marrow donor register and the Anthony Nolan charity.

It has since found matching donors for more than 16,000 people in need of a stem cell transplant, many of them kids with leukaemia like Alan.

Neither Alan or Anthony were expected to survive, yet Alan was lucky.

After being a guinea pig for high doses of chemo and radiotherapy he recovered. Alan, 46, from Barrow in Suffolk, says: I recently realised what a key figure Anthony was in my life.

I spent six months in that hospital and much of that time, he was the only person I could see. We would talk and play card games like Twist through the glass. When I was well enough to move to my local hospital, Anthony was alive.

I went back to Westminster a few months later for bone marrow tests. I went to see Anthony, but he wasnt there. He had passed away.

That happened all the time. My dad would see children running around the ward one day, the next he would see a four-foot body bag in the hall.

Alan was diagnosed with leukaemia after struggling to shake off flu in September 1978 and being sent for blood tests. It was 18 months before he was well enough to return to school.

He was admitted to the hospital in St Albans, where his family then lived and given a lifesaving blood transfusion before being transferred to Westminster.

Doctors feared the worst when chemotherapy and radiation treatment failed.

Alan says: One morning my dad came down and saw I was out of isolation. The doctors said, We dont think he will be here by the end of the week, so we have allowed him out to play with the rest of the children. That evening all my family came, preparing to say goodbye.

However, the doctors decided to give me a second round of treatment, much more aggressive than the first. I was given horrific volumes of chemotherapy to see if my body could take it. We were guinea pigs on that ward, because we had no other hope.

Thankfully it worked, so Alan did not need a transplant. A few months after Alan was diagnosed, his younger sister Angela was born and found to be a match. Had his treatment been unsuccessful she would have been his bone marrow donor.

By the time Alan arrived on the ward, Anthony had been in and out of Westminster Childrens Hospital for six years.

His mum had brought him to England from Australia in the hope of finding a bone marrow donor to cure his otherwise fatal blood disease.

At the time there was no donor register and Britain was in the midst of a recession. NHS cutbacks meant the search soon ground to a halt, leaving Shirley to find funds and volunteers to collect and test samples to see if potential donors were a match.

Shirleys pioneering work, charted in her book A Kiss Through Glass, led to the creation of the first bone marrow donor register in 1974.

Alan says: My dad and Shirley spent a lot of time with each other. Theyd go for a drink occasionally trying to get a bit of normality and hit the refresh button ready to be back next day.

But there were some good times. My dad made pancakes for Shrove Tuesday. Shirley asked if he would make some for Anthony, then the nurses asked him to make some more.

So my dad used the tiny stove in my room to make pancakes for the entire ward, including the nurses.

Comic actor Roy Kinnear, best known for Willy Wonka and the Chocolate Factory and the hit show That Was The Week That Was, regularly visited the ward where his daughter Karina was being treated for cerebral palsy and delighted the children with his jokes.

Forty years later Alan still has his treasured Mr Happy toy which kept him company in his isolation room.

He also has two miracle daughters, Francesca, 20, and Philippa, 17, despite being told the radiation he was blasted with would leave him infertile. Both are ardent Anthony Nolan supporters.

Andy suffers with severe back pain as chemicals injected into his spine caused several vertebrae to crumble. Hes also battled high blood pressure .

Despite this, he hopes to climb to Everest Base Camp in April next year with his brother-in-law and father-in-law and has been training with gruelling treks.

Alan, a manager at Royal Mail, says: Everything we went through has helped so many children. Im lucky to be here and I just want to make the most of my life. That is why I hope to climb Everest to raise money and awareness for Anthony Nolan.

Many know of the charity and its vital work, but dont understand where it came from. They dont remember the little boy who went through so much.

Anthonys life may have been short, but had incredible impact. Thousands have been given a second chance of life. What a legacy.

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Heartbreaking story of leukaemia 'guinea pig' children confined to isolation rooms - Mirror Online

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