Our lives post-BMT

Max’s story

‘To go ahead and have the BMT was the best decision ever. After the BMT I grew taller, became stronger and felt so much better. It was great to feel well, normal and not need to return to the hospital all the time; it was like a huge burden had been lifted.

‘Now I’m at university in Nottingham studying property finance and investment. I’m also interested in photography. I go to the gym and like working out and eating healthily – I make a lot of smoothies! I love partying with my friends. I’m really enjoying student life.’

Tom’s story, as told by him and his mother

Tom says: ‘My BMT has been life changing as I am now pain free, I can eat what I like, I have put on weight and only have to take one medication each day. The first couple of years following BMT I was making up for lost time and enjoying life and all the things I was unable to do when I had CGD. Following BMT I was fortunate to holiday with friends in Thailand – something I would never have contemplated before. I wasn’t interested in settling into a career straight away, I just wanted to enjoy and experience life, so worked in bars, but I have now completed my Apprenticeship and am enjoying my job as a recruitment resourcer.

‘I spend much of my weekends with my son, Freddie, who is three years old; he is great. I know how fortunate I was to receive a BMT. For the first time in my life I can make plans for the future, as now I have one.’

Tom’s mother says: ‘Tom is living life to the full. In the months immediately after his BMT he focused on learning to drive and passed his driving test. Since then, he has completed his Apprenticeship and is now working for a global recruitment company as a recruitment resourcer in the construction and engineering sectors. He left home for a year, renting a flat, but is now back home to save some pennies. He enjoys time with his stepson and has a great network of friends who he loves to socialise with.’

Noah’s story, as told by his mother

‘Noah is doing fantastically well since having his transplant, even playing football for Lye Town FC. Before his transplant, Noah’s low energy levels and infections prevented him from joining a team. All he ever wanted to do was kick a ball around a pitch.

‘Noah has worked hard at school to catch up with his peers after falling behind at the beginning of Year 3. It has been a struggle but we are very proud of the achievements he has made. He has struggled a little socially, finding it hard to form friendships. We believe this is due to him missing so much school and being low on self-confidence. But he is overcoming this too, with the help of the school, which has put in place interventions and a mentoring system. Although there have been a few hurdles to overcome, in general, Noah’s life has become easier. He is a happy lad, with his focus firmly on being the next Ronaldo.’

Sam’s story, as told by his mother

‘Sam is doing really well. He’s at university in Norwich studying politics and is loving the whole experience, so we are delighted.

‘The hospital visits are reduced to seeing specialists at Guy’s and St Thomas’ Hospital in London. We have a few skin issues owing to the high levels of Voriconazole, which has resulted in some pre-cancerous cells. But we have a check-up every three months and the hospital staff have been fantastic. Any skin tags or blemishes that look suspect are removed by local anaesthetic immediately, so the treatment is extremely efficient. Voriconazole saved Sam’s life, so the skin issues are a small price to pay in some regards when you look at the big picture.’

Joe’s story, as told by him and his mother

Joe says: ‘I’m very grateful to have been given the opportunity to lead a normal life and not worry about the impact of CGD. I feel as if I owe my life to my donor and I will always be thankful for what they did.’

Joe’s mother says: ‘Since his BMT in March 2010 Joe has been leading a very normal life. He has achieved excellent grades in ten GCSEs and is currently in his final year studying A levels in biology, chemistry and economics. He is looking forward to going to university in September.’

Jonathan’s story, as told by his father

‘Jonathan was born with X-linked CGD, severe visual impairment and hearing loss. He had a lot of treatments and procedures to manage the recurring infections and inflammation that he experienced since birth. His condition was kept stable with routine treatments until he was five years old, then he developed pancreatitis in 2012. He had to be prevented from eating and drinking for eight months. Jonathan was lucky because a donor was found quickly. He had his BMT in January 2013 at Great Ormond Street Hospital and was discharged after 63 days as an inpatient.

‘His cheerful and loving personality had an impact on all the staff and patients around him. In 2013, post-BMT, his bravery was recognised and highly praised when he received a WellChild Inspirational Child Award, which is his biggest achievement to date. He met Prince Harry at the awards ceremony. Jonathan was also on TV, in newspapers and magazines and became a very “famous” young star. It was a fantastic experience, which not only increased Jonathan’s confidence but also boosted the morale of the whole family.

‘Jonathan is now ten years old, and it is four years since his BMT. He had a very long recovery period after the BMT owing to graft versus host disease. He is getting stronger and healthier and hopefully the steroid he is on will be stopped soon.

‘BMT has made a real difference for Jonathan and our family. Not only has it rescued his life and cured CGD but it has also helped him to lead a healthier and happier life. He now can attend school full time and try out lots of new challenges and activities. He likes cooking, telling jokes and all kinds of sports.

‘The BMT has also taught him to care for other people who need help, as we received massive support and encouragement from others before, during and after the BMT. He has been very keen to become involved in fundraising for different charities.

‘Nothing could stop Jonathan from discovering the world now. The future is brighter and we are all looking forward to seeing his new achievements.’