Four-year-old Jacob was diagnosed with sickle cell disease at birth. His mum Sheree explains the impact that this has had on their lives and why she is so keen to raise awareness and support for Sparks' research.
"I was 41 when I had Jacob, and as an older mum I thought I would get tested for Downs Syndrome and other conditions, just in case. When it came back that my baby had sickle cell disease, I thought it had to be wrong."
Sickle cell crises
"Jacob had his first "crisis" when he was a baby, which is a painful attack caused by sickle cell. At first it was a shock, but now I'm much better at spotting them. I can tell if he's about to have a mini crisis as he looks jaundiced, his eyes go yellow and his hands and feet begin to swell. I know how to feel for his spleen in case it is enlarged, and if it gets too severe then I will take him to hospital. The pain can be excruciating.
Despite everything, he is so good at taking his medicine, and half the time is the one to remind me of what he needs. He takes penicillin daily to boost his low immune system, and also has regular check ups and brain scans. Sickle cell sufferers run a higher risk of having a stroke, so early risk detection is important.
One of my biggest worries as Jacob starts school is making sure that he is taken care of. He much never be put at risk of prompting a crisis by getting too hot, too cold or doing strenuous activity, which means he can miss out. I want him to be able to do normal things, like running, football or swimming. I am fighting to get him access to the warmer hydropool, so that he can do more than just watch his sister Savannah enjoy the water. Last year we managed to get him out playing in the snow for the first time with special boots and a snow suit. Usually he only gets to watch his friends from the window.
Giving something back
Jacob has given me great determination to help him and other sufferers. All the times he has been to hospital he has been so brave - he really inspires me. It's meant a lot to me to be able to give something back and I have done all kinds of fundraising from running marathons to holding car boot sales. Before Jacob, I never would have thought about doing any of those things.
It's important to talk about your feelings to other people - even if it still makes you cry every time. Talking to other families has helped me understand more about his condition, and how to cope with the illness.
My life is dedicated to my children. My daughter Savannah is a carrier of the sickle cell gene like me, but I am determined to raise awareness about the condition. I hope that I can make a difference.
Sparks research into new therapies for sickle cell is invaluable. It is a lifelong condition, and improving methods of treatment would greatly enhance the quality of life for children like Jacob. I'm so grateful to Sparks for funding this vital research.
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