Frankie

Frankie, who is now 7, was diagnosed with ADA SCID at just 3 weeks old. 

Frankie had initial failed his newborn hearing test, which we later discovered can be a symptom of ADA SCID. He hadn’t been feeding great and had jaundice, but we weren’t overly concerned at first. It wasn’t until we asked for him to be checked over at the hospital during his repeat hearing test at 9 days old that everything began to change.

Unfortunately, that marked the beginning of a very lengthy hospital stay for Frankie. Doctors discovered his oxygen levels were low and initially put it down to bronchiolitis, as he was a “winter baby”. However, over the next 10 days Frankie wasn’t improving, so further blood tests were ordered due to concerns around leukaemia.

We received Frankie’s SCID diagnosis on Christmas Eve and were transferred from Fife to Edinburgh. Christmas was spent in a blur, and we were devastated to be separated from Rudy, Frankie’s brother, who was just 3 years old at the time.

Frankie became sicker, and we spent the next three months between ICU and the oncology ward. We were supported by the most amazing consultant, Dr Laura Jones, who did everything she could to keep Frankie in a protected “bubble” and build him up for his all important bone marrow transplant on the Bubble Ward at the RVI.

Frankie was able to receive PEG-ADA injections, which made a big difference to his lungs, and we quickly found a cord blood match so we could move towards transplant.

We headed to Newcastle in mid-April and, compared to everything that had come before, we had a relatively smooth journey. Neutropenia was an issue after transplant, and Frankie needed several doses of GCSF, but he continued to fight through.

Thankfully, The Bubble Foundation provided us with accommodation, which meant Frankie’s brother, Rudy could stay with us during weekends and holidays, along with my parents who travelled from Scotland. We also became close to other families on the ward, friendships that remain to this day.

After discharge, we stayed in Newcastle for five weeks. When we came home, the biggest challenge was still the isolation, which continued for six months. But Frankie remained well, and we were finally all back together as a family after a long and incredibly difficult period of separation. Rudy and Frankie had been apart for months, which was so hard for all of us.

Then COVID struck the UK just a month later after returning, so life continued at a slower pace, but by then, we were already used to isolation. It had become our normal. If we could get through transplant, we knew we could get through lockdown safely at home together.

Frankie continued to do well. His neutropenia took time to resolve, and some of his blood counts remained low, so he stayed on subcutaneous immunoglobulin at home for around four years. Thankfully, he is now off immunoglobulin and fully vaccinated.

As we approach Frankie’s 7th life day, we are filled with nothing but gratitude. We will be forever thankful to The Bubble Foundation and all the teams in Newcastle who supported us through every step of the journey.

Frankie continues to have six-monthly appointments, which will remain part of his life, but he is thriving. Frankie has shown the most incredible strength and courage and has truly been given the gift of life thanks to The Bubble.