Life with sickle cell disease
Four-year-old Jacob was diagnosed with sickle cell disease at birth. His mum, Sheree tells us about the impact 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.
Jacob’s dad left shortly before his first birthday. I wasn’t sure I would manage as a single mum with two kids, one of which has sickle cell. But I do and we have a wonderful life. Jacob’s sister Savannah is so protective of him, she’s almost like a second mum.
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 is about to have a mini crisis as he looks jaundiced, his eyes go yellow or his hands or feet begin to swell. I know how to feel for his spleen to see if it is enlarged and if it gets too severe I will take him to the hospital. The pain can be excruciating.
Despite everything, he’s so good with taking his medicine and, in fact, he reminds me half the time 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 patients run a higher risk of suffering a stroke so early risk detection is important.
“Jacob has given me great determination to help him
and other sufferers… he really inspires me”
One of my biggest worries as Jacob starts school is making sure he is taken care of. He must 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 he can do more than just watch his sister Savannah enjoy the water. Last winter 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 in 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 half marathons to car boot sales for charity. Before Jacob, I would never 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 now to raise awareness about sickle cell. I hope that I can help make a difference.
I think that Sparks work is invaluable. Not only does it help children but it benefits the whole family. They understand what needs to be done. Thank you Sparks.”