‘Our Sons have rare fatal disorder – we met the donors who saved their lives’

Parents Kate and James Had Never Heard of the Rare Condition Their Son Was Born With – and Couldn’t Believe Their Socond Son Also is Diagnosed With It too

A Couple Whose Sons Were Both Born With An Extremely Rare Genetic Disorder have met with two donors who saved their boys’ lives.

Kate Greenstock, 41, and Her Partner James Reeve, 44, From Margate, Kent, Were Given the Devasting News Their Son Otis, Now Five, Had Been Born With Severe Combined Immunodeficiency (SCID). Wen the couple had the second Son, Nelson, Now Three, They Discovered he Also Had Scid and Needed A Cell Transplant to Survive, Like His Brother. They “Couldn’t Believe It” and Felt “absolutely devastated”.

Scid is a condition which means the boys effecatively did not have a working immune system and well presented with vomiting at three months old. Acciting to the National Institute of Allergy and Infectious Diseases (Niaid), The Condition is Fatal, Usually with the First Year or Two of Life, Unless Infants Receive Immune-Restoreing Treatments, Such as Transplants.

The Family was Saved two german donors came forward as matches and were found by the anthony Nolan Charity. The Cell Cell Transplants were a success, and this year, just after otis’ five -ear 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 Not Feel Like “Family”. Kate, A Design Director, Said: “It was one of the best experiences of my life, meeting say.

“I Collated Domainik from Stansted Airport, and i wrote in German, ‘thank you for saving otis’ life’, on my sign. That hug we have at stansted was like not.

James, A Software Designer, Added: “They have made our family posseible. Meeting say meant the absolute world to us and … i’ve a feeing that is the beginning of a lifelong relationship.

The Couple Had Never Heard of Scaci Before Otis Was Born in July 2019, but they notes otis Stopped Gaining Weight on Around Three Old and Started Vomiting and Knew “Something Wasn’t Right”. DOCTORS DISCOVERED OTIS HAD PNEUMONIA AND HE INTO INTO CARE, DIFT BEING TO EVEREVELINA London Children’s Hospital and Then Great Ormond Street Hospital (Gosh).

This is wen kate and james were told otis had what 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 him off the ventilator’, but he also the treratment for Scid be a year long,” Kate Said.

Due to Scid Caususg 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 Cell Transplant, Their Son Had “No Way to Fight Offer” – But 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 Cell Cell Transplant Charity Anthony No Looking for A Suitable Donor, but with the Covid-19 Restriations at the time, the couple Feared this time 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 – Dominik, From Germany – and Anthony Nolan was able to transport his cells to the uk.

Otis thatn underwent chemotherrapy, which caused anaphylactic shock, but after recoverying and switching to another type of chemotherapy, he was able to recipes the transplant in april 2020. This Involves Doctors Giving New, Health Stem Cells to the Patient Via 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 centrities in the world and they were able to help us Through this Very Scary and Surreal Situation – it just phenomenal,” James recalled. “We oWE say 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 celebrity otis’ First Birthday and THRISTMAN. SINCE they have otis haad scid, they learned there was a one in four chance that another baby woul have the same condition.

Wen Kate Fell Pregnant Again, She underwent testing and nelson was diagnosed with scaci before he was Born in March 2022, whic left say “devastated”. “We kew we were tachying a chance by getting Pregnant Again, but we didn’t think we were going to be unlucky.”

Howver, Due to this Early Diagnosis, It Meant Anthony Nolan Could 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 EASID ‘NO’, WERE WILLING TO GIVE TO THEIR TIME AND BODIES THRAGH SENDS.”

To give back, james decidated to run the tcs London marathon to raise Money for Anthony Nolan. He reciped more than £ 7,000 in donations, Surpasing his £ 5,000 target. Feeling “Constantly grateful” for the Donors, they decided to invite to London for the breed and said meeting say 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-Stem Cell Transplants. “This Feels Like the Cling of One Very Difficult Chapter and the Celebration of a New Chapter.

“I JUST FEEL SO GRATEFUL THAT, IN OUR CASE, ITH’S NOT ONLY ONLY Story, ITS 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