Daniel's Story

Daniel was born with a heart condition, pulmonary atresia with VSD and has had many open heart surgeries in his young life. However, other than having slightly less energy than his peers, life was relatively normal for us until around two years ago.

We all had covid in February 2021 and then in March Daniel started to feel more tired. He woke up one morning and his arm was covered in a rash. At first we were told Daniel had ITP. He became more and more unwell, bruised easily and became transfusion dependent, requiring blood/platelet transfusions weekly. He was diagnosed with aplastic anaemia and was in bone marrow failure. We were told he the only cure would be a stem cell transplant, with his younger brother Oliver being his donor. Originally this was to be at UCLH. After more biopsies and tests we were told Daniel had myelodysplasia. The treatment was still the same. The transplant was now going to be at GOSH as they have cardiac specialist team. However, it was put on hold three times due to complications, the final one being the condition of his heart.

Daniel had to have a new heart valve in February 2022 in Southampton, so that the transplant could proceed. Needless to say, there were some complications but once again Daniel got through it!

After Daniel recovered from the new valve, he was days away from transplant and it was cancelled again. There was hope that Daniel’s bone marrow could be showing early signs of recovery. His blood numbers stabilised slightly and he didn’t need transfusing as frequently.
After another biopsy Daniel’s bone marrow was showing aplastic anaemia again. The treatment was still the same. We were in a period of ‘watch and wait’.

Although Daniel hasn’t needed a transplant yet, we are still nearly two years on, trying different treatments and wondering will this ever end!
Daniel has endured many procedures, tests and visits to Southampton, UCLH and Great Ormand Street and understandably this has taken its toll on him both physically and emotionally.

Recently Daniel had not been feeling himself and after a check up with his cardiologist, it was discovered that he had suspected endocarditis, an infection in his heart. Almost three weeks in hospital and we were sent home with IV antibiotics, only to return due to him catching another infection!

Daniel is still receiving treatment under the care of Southampton. Medication doses are constantly being increased or even changed. We live in anticipation and dread each week for his blood results to see if the numbers improve. The slow drop is so deflating!

We are living in limbo as things can and do change very quickly. This turmoil and horrendous year has meant Daniel and his brother have been separated for times whilst he is in hospital. It has damaged us all in ways that I couldn’t imagine. I have never cried so much in my entire life!

A break away from everything is something we have been longing for. We are all so excited about the opportunity to get away, distract ourselves from blood tests and appointments, make happy memories and we are really looking forward to it.

Thank you to Mary Ellis and Marie Frankcom for leading the way and a HUGE thank you to the amazing Ben Saunders Foundation for making this happen for us! We are so grateful for your generosity and kindness. 💕