What on earth was this rare disease?

Seb became ill 2 days after his 14th birthday on February 4th 2017. The trigger for his GP to suggest a blood test was that his nails and skin appeared pale. I have to be honest, we didn't suspect anything even though now, with hindsight, he was feeling breathless and had been complaining of leg pains. We just dismissed them as 'growing pains' as he was so incredibly fit, active, excellent at sport and was in fact a champion downhill mountain biker.

On 7th February the doctors at Frimley Park Hospital told us he had leukaemia, then a few days later a bone marrow biopsy at St. George's Hospital revealed that he had severe aplastic anaemia and the only option was a Bone Marrow Transplant. In many ways we had started to accept the prospect of three years of gruelling treatment for leukaemia and understood more about it, but what on earth was this rare disease?

I felt we were entering unknown territory and all the doctors kept telling me was that it was something they had never seen in their whole career.

Life changed at that point. I cannot even recall the number of admissions to hospital, often late at night with a high temperature, but I do know that I became very good friends with the doctors and nurses at our local hospital. Seb appeared to be fading away before my eyes while we anxiously waited for a donor to be found through Anthony Nolan. The hardest part for me as a parent was having to hand all control to the professionals caring for him and feeling powerless.

A donor is found

A 10/10 donor was located - a white UK male aged 32. A completely selfless individual who we hope to meet later this year. It took a long time to coordinate the transplant and life continued to be hospital admission, after hospital admission for blood transfusions, platelets and the conservative treatment of potential sepsis. Seb had no resistance to infection due to his neutropenia. He then developed appendicitis and spent the worst weeks ever in St. George's Hospital recovering. This delayed everything and I remember feeling that this was so unfair. He had enough to deal with and now this!

On 1st September 2017, after gruelling conditioning including chemotherapy, Seb had his transplant at the Royal Marsden Hospital. As I write this, Seb is doing work experience at the local golf club and is then off to the gym! It has been a tough year but the best advice I was given was to take things day by day or at times, hour by hour. Humans really are amazing! I never lost my faith in the good of others but this experience has elevated it.