Let me start by saying thank you for visiting this page and for taking the time to read this story and consider donating to a charity that is incredibly close to my heart. The work that Great Ormond Street Hospital does is literally life-changing (and often life-saving), and I have seen first-hand just what that incredible work involves. Therefore, let me reiterate my gratitude for any donations received as part of this fundraising effort.

My son, Teddy, has a rare genetic condition which has caused him to develop chronic lung disease, impacting his body’s ability to retain oxygen. Arriving at a diagnosis was not easy – in fact it took nearly 4 years. When he was born he spent a week in a neo-intensive care unit (NICU), as he was unable to maintain suitable levels of oxygen. However, this was initially put down to the fact he was quite small and that, having arrived slightly early, his lungs may not have fully developed. On being discharged from NICU, it was believed Teddy would not suffer any long-lasting effects. However, over time, he struggled with a range of chest infections, often requiring hospital treatment. The worst of these occurred on his first birthday in December 2015, when he was hospitalised for over 6 weeks, stretching over Christmas and into the new year. This was an incredibly difficult period, culminating in some moments where we were unsure whether he would recover. His young body was being put through a tremendous amount of strain, and, without a diagnosis, it seemed unclear how we would be able to support any short- or long-term recovery. This episode also caused some permanent damage to Teddy’s lungs, further hampering his ability to take in and maintain reasonable oxygen levels. As a result he was only able to be discharged on the basis he received constant oxygen support.

The following 3 years was a period of adjustment and adaptation. Under the care and guidance of the respiratory specialists at Great Ormond Street, Teddy’s condition stabilised. But this still meant frequent visits to the hospital’s Leopard Ward – sometimes planned, sometimes emergencies.  At times it felt soul-destroying, with no-end in sight. And yet Teddy took it in his stride. While hospital visits weren’t his idea of a great time (when are they?!), the support he received from the nursing staff and the play support volunteers at GOSH provided him with some “normality”, a routine, and some moments of fun at a time when there was very little to smile about.

Some specialists had considered whether Teddy might have cystic fibrosis (CF), given some of his symptoms were closely aligned to those of CF patients. However, every time the condition was tested for, the results came back negative. It wasn’t until some further genetic testing was completed that it was discovered that Teddy had a very rare genetic chromosome defect which might have been the cause of his low oxygen levels. There was no cure for this condition, as it was so unknown, but it perhaps provided an answer to why Teddy had been struggling. Still, with no change in approach, regular hospital visits remained a constant, and concerns elevated every time he got a cold or chest infection. It reached the point where we were recommended to speak to the transplant team at GOSH – possibly the most gruelling experience I have ever been through aside that first extended hospital stay in 2015. After listening to the incredible advancements in transplant success and frequency, an exhausting day ended with hearing some of the statistics for lung transplant success, the worst of which, in my opinion, was the life expectancy rates. It was then that the transplant specialist gave their recommendation that Teddy be added to the waiting list as his lungs were showing no signs of improvement. Another moment that will stay with me forever. It was sickening and heart-breaking. A state of paralysis came over me, where I couldn’t quite believe what I was being told. Yet at the same time I was just nodding, wanting to get out of the consultation room and just cuddle Teddy as tightly as possible. Teddy’s mum and I both knew, coming out of the consultation that we would do whatever it took to prevent that course of action. I have a real admiration and deep compassion for parents that have to go through that, and especially for those who have little/no alternative but to agree to it.

It was about 6 months later, during another routine hospital stay, and following the results of the genetic testing that a respiratory specialist at GOSH (who had been studying Teddy’s case) suggested introducing hydroxychloroquine into Teddy’s medication. I often look back at this as a watershed moment, because from that point on, Teddy’s ability to maintain suitable oxygen levels improved drastically. This meant he no longer required oxygen support. It meant no more worrying about his oxygen levels at night. It meant no more carrying oxygen canisters when leaving the house. For Teddy, it meant being able to start school “normally” (without the need for oxygen canisters or extra support). And for his mum and me, it meant that a transplant could (eventually) be removed from the equation! I don’t know whether the drug was the only reason – I’m not sure whether I cared! But I will always remember being discharged that time and our little boy no longer requiring oxygen support.

Teddy is not at the end of his journey, but he continues to make massive steps in the right direction. And we are just grateful that he is now in a position to continue to do so, which is thanks to the exceptional people that work at Great Ormond Street. He is still under the care of GOSH, but these visits are only scheduled check-ups, and even those are becoming less frequent as he continues to grow and get stronger. And on those visits, he is still recognised around the hospital, especially by the incredibly kind nursing team and volunteer play helpers, who have been part of his story. It’s that kindness, time and generosity that have really encouraged me to do something to help raise money for the organisation. Everything raised here will go a long way towards providing essential support for those people that are working tirelessly to care for children like Teddy, and their families, when needed the most.

I will be adding regular updates as I start my training and prepare for the Marathon on Sunday 21st April 2024. Obviously, I appreciate it may not be possible for you to turn out and support on the day, so any support you can provide throughout the journey will be greatly appreciated.

Thanks again!

Alex

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