Two-year-old Macsen – known as Macs – suffers from LAD1, a very rare immune disorder that means his body can’t fight infections as it should. The condition went undiagnosed for 15 months, until he became very sick and tests revealed he was suffering from the illness.
Mum Zoe and dad Richard were given two options. The first – keep infections at bay with a lifetime on antibiotics – a temporary solution that ultimately would have seen Macs’ life expectancy cut short. The other option was to undergo a bone marrow transplant, which, if successful, would mean a normal, healthy life.
Macs’ dad, 29-year-old Richard Oatway, said: “For us the decision to go ahead with a bone marrow transplant was a no-brainer. Macs’ quality of life is so important to us and this was the only option to give him the chance at a long, healthy life.”
The family first arrived at the bone marrow transplant unit in Newcastle’s Great North Children’s Hospital in late October this year. Macs started treatment almost straight away and was successfully matched with a bone marrow donor, undergoing his transplant on 5th November this year. The family are waiting to find out how Macs’ new bone marrow has taken after the transplant and he continues to have regular check-ups.
Whilst in the Unit away from their home in South Wales, the Oatway’s have been supported by The Bubble Foundation, which is providing accommodation for their stay in Newcastle and donating toys to Macs on the ward.
Richard said: “Being away from home under these circumstances is both as completely different and exactly the same as we’d expected. Macs is doing great – he’s got his mum and dad both with him – but it does get hard for us, being away from everybody.
“He’s our strength – it’s remarkable to see him just getting on with things. He’s going through so much but he never lets it get him down.
“We’re just waiting now. 100% of the donor bone marrow would be the best possible outcome, but we don’t know at this stage. Hopefully when his blood levels increase, we’ll move into what’s known as purple isolation, where Macs will be slightly less restricted and can get back into the fresh air and see a bit more of the world. We’re looking forward to the point we can go back to Wales – but one step at a time.
“My wife Zoe and I are facing a really difficult situation but the team here help so much, everybody has been great.”