Sophia's Story

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Sophia was born in June 2022 and was diagnosed with severe combined immunodeficiency disease (SCID). Babies with this condition appear healthy at birth, but are highly susceptible to severe infections as their immune system is compromised and they are unable to fight infection effectively.

SCID is a rare condition that affects the immune system. The most common treatment for the condition is a bone marrow transplant, which introduces normal infection-fighting cells into the child’s body

An early diagnosis meant that Sophia could be treated immediately so, at seven weeks old, Sophia was admitted to the Great North Children’s Hospital in Newcastle. Sophia had to have chemotherapy before undergoing a bone marrow transplant, which she received from her mum Janine, to introduce normal infection fighting cells. Following the transplant, Sophia had to stay in hospital for four months to recover and to make sure the treatment had worked.

To protect patients, the ward that Sophia was on had very strict infection control policies and one parent had to stay with her twenty-four hours a day. Janine and David, Sophia’s dad, took turns to stay with her and only saw each other briefly every day. Family Support Worker, Jen, started supporting Sophia and her family in August 2022. As one adult always had to be with Sophia, Jen visited once a week to give Janine and David the chance to be together, spend time away from the hospital and have a break to catch up as a couple.

Janine and David said:

“During Sophia’s treatment, Jen has allowed us the opportunity to spend a few hours together as a couple outside the hospital, whilst she looks after and entertains Sophia. This has provided us with much needed breaks during a difficult time and we know that Sophia is in very safe hands.”

Jen helped to look after Sophia, whose favourite things were playing with sensory toys, nursery rhymes and story time. Following medical advice, Jen also did ‘tummy time’ which was a series of muscle exercises to strengthen Sophia’s core and build strength, which will help achieve her baby development milestones of sitting, to eventually crawl, stand and walk.

Following her bone marrow transplant, and once her immunity had reached key levels, Sophia was able to go to a half-way house at the end of November to allow her immune system to continue to rebuild.

Sophia finally went home on 16 December, just in time for her first Christmas at home, where she was able to spend lovely moments with her grandparents, who hadn’t seen her since she was two weeks old.

“Jen is amazing and Sophia loves spending time with her.”

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Hearing your child has a life-threatening illness is the hardest thing any parent can experience - but they don’t have to go through it alone.

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