Parents Kate and James had never heard of the rare condition their son was born with – and couldn’t believe their second son was also then diagnosed with it too
A couple whose sons were both born with an extremely rare genetic disorder have met the two donors who saved their boys’ lives.
Kate Greenstock, 41, and her partner James Reeve, 44, from Margate, Kent, were given the devastating news their son Otis, now five, had been born with severe combined immunodeficiency (SCID). When the couple had their second son, Nelson, now three, they discovered he also had SCID and needed a stem cell transplant to survive, like his brother. They “couldn’t believe it” and felt “absolutely devastated”.
SCID is a condition which means the boys effectively did not have a working immune system and were first presented with vomiting at three months old. According to the National Institute of Allergy and Infectious Diseases (NIAID), the condition is fatal, usually within the first year or two of life, unless infants receive immune-restoring treatments, such as transplants.
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The family was saved when two German donors came forward as matches and were found by the Anthony Nolan charity. The stem cell transplants were a success, and this year, just after Otis’ five-year anniversary post-transplant, the family arranged to meet the two donors.
The couple invited the two “selfless” men, Domenik and Julian, from Germany to the TCS London Marathon, which James took part in, and said they now feel like “family”. Kate, a design director, said: “It was one of the best experiences of my life, meeting them.
“I collected Domenik from Stansted Airport, and I wrote in German, ‘Thank you for saving Otis’ life’, on my sign. That hug that we had at Stansted was like nothing I’ve ever experienced before.”
James, a software designer, added: “They have made our family possible. Meeting them meant the absolute world to us and… I’ve got a feeling that this is the beginning of a lifelong relationship. It feels like they’re family.”
The couple had never heard of SCID before Otis was born in July 2019, but they noticed Otis stopped gaining weight at around three months old and started vomiting and knew “something wasn’t right”. Doctors discovered Otis had pneumonia and he went into intensive care, before being transferred to Evelina London Children’s Hospital and then Great Ormond Street Hospital (GOSH).
This is when Kate and James were told Otis had SCID when he was six months old. “He was still on a ventilator, fighting for his life at the time, so the doctor said, ‘The first thing we need to do is get him off the ventilator’, but he also said the treatment for SCID will be a year long,” Kate said.
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Due to SCID causing major abnormalities of the immune system, Otis was kept in an “isolation room” at Gosh to reduce the risk of infection. Kate and James were told that, without a stem cell transplant, their son had “no way to fight off infection” – but he needed to recover from pneumonia first, otherwise it was “too dangerous”.
James said: “We were whisked up to London, and then we didn’t come home for five months.” During this time, the UK stem cell transplant charity Anthony Nolan was looking for a suitable donor, but with the Covid-19 restrictions at the time, the couple feared this would affect or delay the process.
The charity facilitates around 1,100 stem cell transplants from an unrelated donor every year for patients in the UK and more than 300 for patients abroad.
Kate said they were “hopeful and terrified in equal parts” and just prayed for a positive outcome. She added: “It really felt like we were against the odds to be able to get the cells.”
Thankfully, a donor was found for Otis – Domenik, from Germany – and Anthony Nolan was able to transport his cells to the UK.
Otis then underwent chemotherapy, which caused anaphylactic shock, but after recovering and switching to another type of chemotherapy, he was able to receive the transplant in April 2020. This involves doctors giving new, healthy stem cells to the patient via their bloodstream, where they begin to grow and create healthy red blood cells, white blood cells and platelets.
“We were at one of the best centres in the world and they were able to help us through this very scary and surreal situation – it was just phenomenal,” James recalled. “We owe them everything.”
The transplant was successful and, after ringing the bell to celebrate the end of his treatment in June, the family were able to return home and celebrate Otis’ first birthday and then Christmas. Since they knew Otis had SCID, they learned there was a one in four chance that another baby would have the same condition.
When Kate fell pregnant again, she underwent testing and Nelson was diagnosed with SCID before he was born in March 2022, which left them “devastated”. “We knew we were taking a chance by getting pregnant again, but we didn’t think we were going to be that unlucky.”
However, due to this early diagnosis, it meant Anthony Nolan could search for a donor before he was born, and the best match was Julian, from Germany. Nelson underwent his transplant in June 2022 at just three months old, and it was a success. He rang the bell to mark the end of his treatment in July.
Kate said: “In some ways we’ve been unlucky, but we’ve been so lucky that Anthony Nolan exists and that two men in Germany who, could have easily said ‘no’, were willing to give up their time and put their bodies through something for us.”
To give back, James decided to run the TCS London Marathon to raise money for Anthony Nolan. He received more than £7,000 in donations, surpassing his £5,000 target. Feeling “constantly grateful” for the donors, they decided to invite them to London for the race weekend and said meeting them was incredibly emotional.
With both boys now “happy and thriving”, Kate and James want to continue raising awareness of the charity and the importance of life-saving stem cell transplants. “This feels like the closing of one very difficult chapter and the celebration of a new chapter.
“I just feel so grateful that, in our case, it’s not only one happy story, it’s two happy stories. They have saved our children’s lives,” James added.
To join Anthony Nolan’s register or support its research, visit: anthonynolan.org