Four-month old Frankie Gartshore is living in a ‘bubble’ as his immune system is so weak any infection could kill him.
The tot from Fife is awaiting a stem cell transplant in the world-renowned Bubble Unit at the Great North Children’s Hospital, in Newcastle.
His parents Linsay, 35, and Graham, 39, are by his side in the sterilised room known as a bubble, designed to protect him from bugs or bacteria.
The Leven couple have told of their heartache as they work to raise awareness of primary immunodeficiencies and ensure early diagnosis and the best treatment for others.
Frankie was diagnosed with severe combined immunideficieny (SCID) a few weeks after his birth.
Linsay 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.”
Doctors found Frankie’s oxygen saturation levels were low and he was admitted to a neonatal unit. It was suspected he had bronchitis before his diagnosis with SCID.
Linsay said: “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 from the Royal Hospital for Sick Children, in Edinburgh, to Newcastle on April 14, where he is being cared for by staff in the children’s bone marrow transplant unit.
He has started chemotherapy and Linsay and Graham, who also have a four-year-old son Rudy, hope to know more about his transplant in the next few days.
Linsay said: “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.”
The couple are supporting the unit’s charity, The Bubble Foundation, and the Jeffrey Modell Foundation in highlighting the early warning signs, which include recurrent infections.
Gill Wheeldon, fundraising manager, said: “We are very grateful to the Gartshore family for sharing their story.
“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.”
