Forncett St Mary family thanks EACH for support given during their son’s tragic battle with an immune system disorder
A mother, whose son died five days short of his first birthday, has spoken of the support East Anglia’s Children’s Hospices (Each) gave her and her family.
Susie Thorndyke’s son, James, had severe combined immunodeficiency (SCID) and received care at Each’s former Quidenham hospice prior to his death in February 2017.
Susie, who lives with husband Justin, their 11- year-old twins, Oliver and Ethan, and five-year-old daughter, Katie, in Forncett St Mary, said she will always be grateful for the charity’s care and support – even though she was reluctant and reticent at the time.
She added: “I think about that period of time every single day and will always be thankful.
“The nurses were lovely. They were there for us and made sure we had everything we needed. Nothing was too much trouble.”
James was a healthy baby, born on February 23, 2016.
At just eight weeks old, he developed a cough after having his immunisations and was initially treated for pneumonia.
Over the following week, James’ condition worsened and he was readmitted to hospital.
After becoming even worse, having seizures and requiring oxygen support, he was moved to Addenbrooke’s Hospital, where he was diagnosed with SCID and then moved again to Great Ormand Street Hospital, in London.
SCID is the name given to a group of rare disorders which cause severe abnormalities of the immune system.
It happens when white blood cells, responsible for fighting infection, are missing or not working properly, resulting in serious and often life-threatening infections.
After being on a ventilator for three weeks, doctors were concerned that James would not survive as his body was being destroyed by infection.
But he defied the odds by coming off the ventilator and was able to breathe on his own again.
His family were told a bone marrow transplant was the only long-term cure, but James was too ill to have the chemotherapy that ran alongside the operation and there was not enough time to wait for a matching donor.
So James’ dad, Justin, donated his T-cells, a type of white blood cell, in the hope that it would create an immune system inside James over the following six months.
When James gained strength and weight, his family were able to take him home and, though he had no immune system, he continued to fight, even growing his hair back.
But it did not last and he became ill again, having uncontrollable seizures and was readmitted to Great Ormand Street in January 2017.
The bone marrow transplant had been unsuccessful and his body was being attacked by a virus called CMV, which had made James blind and caused scarring to his brain, meaning he would be severely disabled.
After many exhausting and heart-breaking discussions, James was able to return home to be cared for palliatively, with the support of staff at Quidenham. It gave his family the chance to enjoy their time left together.
James died in Susie’s arms three weeks later.
She said: “No words can describe the pain of watching your baby die, knowing you are never going to hold or see him again.
“However, the alternative scenario – him passing away in a hospital, rather than with me at home – was unthinkable.
“I used to go into his room after he had passed and every time I used to hope and pray he was alive again.
“I found it so difficult and struggled with the memory-making, too. We made hand and foot casts and, at the time, I could not accept what was happening and why we were doing it.
“Thankfully, the care team knew that, in the long run, I would benefit and they were so right. Those hand and foot casts are among our most treasured and precious possessions.”
After James’ funeral, Susie received counselling from Each and says it made a huge difference.
She added: “Our counsellor has always been entirely supportive and I know I can always be open and honest with her, without any fear of being judged.
“It makes such a difference and I can honestly say I would not be here now without Each’s support. I would not have coped.”
There are now two bricks at Each’s The Nook in Framingham Earl, bearing James’ name.