Hannah shares her heartbreaking story of loss to highlight the importance of the medical research carried out by children’s charity Sparks.
Being told your child has an incurable and deadly disease is every parent’s worst nightmare. Unfortunately it’s what Hannah faced when her second daughter, Phoebe, was diagnosed with Krabbe disease at just 18 months old. Tragically, she passed away a few months later. This is their story.
“It was a normal birth, a normal pregnancy, the same as her sister. However, as time went on, she wasn’t rolling or crawling or making any attempts to pull herself up. Eventually, she was referred to a lovely lady, Jill Gordon, at the child development centre in Bury St Edmunds. Jill said that she needed to carry out further tests on Phoebe, which included some bloods and an MRI scan of her brain,” says Hannah.
“On the 29 October, Jill came to the house and said it was Krabbe, a rare neurodegenerative disease. It was heartbreaking,” Hannah continues. Krabbe disease is a disabling condition that currently has no cure. The disease causes inflammation to nerve fibres in the brain and spinal cord, gradually destroying the white matter in the brain and preventing signals being sent to the nervous system. Krabbe disease is rare, affecting 1 in 100,000 births in the UK each year.
“We were told that there was nothing they could do and that we should start cherishing memories. I didn’t want Phoebe to go into a hospice, I wanted her to be at home and have everything she needed. We started to make the most of it and tried to be normal.”
Living with the condition
“We couldn’t do too much because as time went on, Phoebe started having seizures and had issues breathing. She started to lose her sight and she only knew I was in the room because she could hear me. I used to talk to her a lot and would tell others to speak to her too.”
“She gave me so many happy memories and the little things she did do meant such a lot. One time she did say in her own little way that she loved me,” remembers Hannah. “When you are told that your child is going to die but you don’t know when it is hard to put them to bed because you think, “Is this the last time I will see her?”
How Sparks is helping
Sparks are a children’s medical research charity that support research into any medical condition affecting children’s health, from rare diseases to the most common illnesses. They have launched the Not Yet Available Campaign centering around empty medicine boxes, highlighting the range of cures and treatments that don’t currently exist for over 4,000 rare childhood diseases.
Sparks are funding scientists at the University of Cambridge, led by Professor Timothy Cox to discover more about how Krabbe disease develops – and how they can stop its devastating progress. Finding a way to treat the disease could offer hope to families of affected children. Scientists have recently identified a process called necroptosis where the sheaths of cells that support the brain and nervous system are destroyed. Professor Cox and his team will target this process and test whether they are able to block it.
“I think it’s brilliant what Sparks are doing. I would love it if in time, this disease never existed or is just like the common cold which can be treated.” said Hannah.
Read our interview with joint-presidents of Sparks Ben and Una Foden here.