Tuesday, 19 August 2014

We need more Superheroes in Hyndburn and Haslingden

The Antony Nolan Trust has ranked Hyndburn and Haslingden as 228th in the league table of constituencies by the number of registered stem cell donors. We have a total of 840 people registered and I’d like to think we can recruit more people in order to help people with blood cancer.

I was recently contacted by a young Hyndburn family whose son Charlie aged 5, needed a registered donor and I hope this story will encourage others to register as a superhero donor.

Lucy Hamlin, Charlie's mother has given permission to use Charlie's details to help raise awareness of the issue.

Charlie, had just turned 5 when he was taken to Royal Blackburn A and E in January 2013 with a nosebleed that just wouldn’t stop. A blood test at the hospital showed he had low red blood cells and platelets and that he needed an immediate blood transfusion, followed by a platelet transfusion. The next morning he was transferred by Ambulance to Royal Manchester Children’s hospital with suspected leukaemia.

Further tests including a bone marrow aspirate and further blood tests showed that he had Aplastic Anemia - bone marrow failure - and needed ATG treatment or a Bone Marrow transplant as soon as possible. He was let home after a week’s stay but had to return twice weekly to Manchester for blood tests and weekly blood and platelet transfusions. He was at risk of infection and was unable to return to school, or mix with other children in case he picked up an infection. He was also on antibiotic medication to prevent him getting ill.

Unfortunately a search of the bone marrow register came up with no suitable matches.

By March, he had undergone further bone marrow aspirations and more blood tests to find out what had caused his bone marrow to fail. This meant that ATG treatment would not work and his only option was a bone marrow transplant. The consultant was very clear that if he did not undergo a bone marrow transplant, he would not survive.

Further searches of the bone marrow register came up with a possible donor in Brazil, so in reality we still did not have a donor.

Eventually, the register found umbilical cord donors available (where mothers donate their umbilical cord blood just after birth) but again, these were from overseas. However there were four possible matches available.

Charlie was booked in for his transplant on Monday 20th May 2013 but was admitted on 13th May as he underwent Total Body Irradiation (radiotherapy) and four days of chemotherapy to destroy what was left of his own bone marrow.

He had his transplant with a donor cord blood from Germany as scheduled and the family waited patiently for it to take effect. Unfortunately by four weeks post-transplant it was evident that it had not worked and by six weeks post-transplant, the consultant was discussing other options - including testing his mother and his father as half matches. Before they decided on using his mum’s cells, they decided to try a second cord donor from New York as this was a better match.

Charlie had his second bone marrow transplant on 15th July 2013 and luckily this did work. During this time, Charlie was in isolation, which meant he was unable to leave his hospital room on the bone marrow transplant unit and was limited to only 4 visitors throughout this period.

Thankfully, he was discharged after 105 days in hospital on 29th August and had to take many different medications to keep him healthy. He had daily visits back to Manchester, which became weekly visits, then twice monthly. He was finally told he had full immune recovery on 18th December 2013 - just in time for Christmas!

Today, he is doing very well. He was able to return to school in February 2014 and takes everything that has happened to him in his stride.

Charlie’s story helps us see that joining the register can save lives and help children in Hyndburn and Haslingden. I’d like to thank his mum, Lucy, for contacting me about the Antony Nolan Trust and their campaign.

For information please visit: www.anthonynolan.org.