The family of a baby being cared for on the ‘Bubble Unit’ at the Great North Children’s Hospital, are showing their support for World Primary Immunodeficiency (PI) Week.
The Gartshore family from Leven shared their story during World PI Week, and aim to raise awareness of Primary Immunodeficiencies, to drive early diagnosis and optimal treatment.
They are supporting the unit’s charity, The Bubble Foundation, and the Jeffrey Modell Foundation (JMF), in highlighting some of the early warning signs of PI’s, including recurrent infections, as it runs a special drawing competition and encourages others to share their experiences.
Four-month-old Frankie Gartshore is being looked after by the team on the Children’s Bone Marrow Transplant Unit in Newcastle, where he is awaiting his transplant. He was diagnosed with Severe Combined Immunodeficiency (SCID), a potentially fatal primary immunodeficiency, a few weeks after he was born.
Mum, Linsay (35) said: “We first started to realise something was wrong when Frankie was six days old. He was a little bit queasy and really red in colour. By the time we went for his newborn photoshoot, he was really wheezy, so we took him to the hospital where he underwent a number of tests.
“We found out that Frankie’s oxygen saturation levels were low and he was admitted to the neo-natal unit. At the time, it was suspected he had bronchitis. He was put on oxygen but he didn’t get better. The doctors continued to run tests and it was then that we were told he had SCID.
“Frankie then got an infection in his lungs around Christmas time and on December 28 he had to go into theatre. He was put on a ventilator for a day and spent seven days in ICU, which was so tough. He then needed respiratory support for the next six weeks.”
Frankie was transferred to the Great North Children’s Hospital in central Newcastle on April 14 and is currently waiting for a bone marrow transplant. He is staying in a sterilised room – known as a ‘Bubble’ – designed to protect him from any bugs or bacteria, where Linsay and her husband Graham (39) are constantly by his side.
Linsay continued: “Frankie had his new central line fitted last week and he has started his chemotherapy, so we will know more about his transplant in the next few days. We also have a four-year-old son Rudy, who will be coming down to Newcastle soon and we have the support of our parents. It has been a massive shock to the system and this is a difficult time, but Frankie is doing well and we are glad he is in the best possible place.
“I really do think it’s vital that we raise awareness of Primary Immunodeficiencies so more people are aware of the conditions and every child receives the best possible treatment. I’d also like to see SCID included in all newborn screenings.”
Gill Wheeldon, Fundraising Manager at The Bubble Foundation, said: “It’s so important that we raise awareness of the signs of Primary Immunodeficiencies so that more children suffering from the illnesses, can be treated and go on to live normal, healthy lives.”
The Bubble Foundation supports the ‘Bubble’ unit at the Great North Children’s Hospital and raises funds towards the welfare of the babies and children on the ward and the pioneering research into improving treatments for sufferers of these illnesses.
The team is involved in research projects which are transforming success rates for patients and improving day-to-day care.