Hannah talks about Phoebe, 29 May 2011 – 23 February 2013
“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.
On the 29th of October, Jill came to the house and said it was Krabbe disease. We were told that there was nothing we 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.
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.
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?’ I think it’s brilliant what Sparks are doing. I would love it if in time, this disease never existed and is like a common cold which can be treated.
How Sparks is helping families affected by Krabbe disease
Krabbe disease is a disabling condition that currently has no cure. Scientists at the University of Cambridge, led by Professor Timothy Cox, want to discover more about how the disease develops – and how they can stop its devastating progress.
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.
Treatment may be able to change the way the disease affects patients and should be relatively simple to administer because large biotechnology companies are working on other treatments for diseases where necroptosis is important. If successful, the project would offer a huge incentive for developing treatments for many devastating conditions affecting the nervous system.”
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