Sickle cell disease is an inherted blood disorder that affects the red blood cells. Red blood cells carry oxygen throughout the body. In a healthy person, hemoglobin is smooth, round, and flexible. That allows red blood cells to glide easily through your bloodstream. But if you have Sickle cell, the hemoglobin’s shape is abnormal. It forms rods that clump together. That causes red blood cells to become rigid and curved. The odd-shaped cells block blood flow. It’s dangerous, and can cause extreme pain, anemia, and other symptoms.

Ok so my story, 16 months ago my life changed when i gave birth to my beautiful baby girl Lilly-Mae. I felt as if everything I had ever dreamed of was in one little person. It literally was love at first sight. I was told following my newborn screening that my baby did not have sickle cell as my midwife knew I worried about it and both me and her dad did not know that each other had sickle cell traits. So we was discharged. To say that I felt relieved was an understatement! However 2 weeks later I was visited by a specialist nurse. I was a little bit confused about the visit but I was a new mom so just thought it was just routine. The lovely lady came in and spoke to me. She then handed me a paper which states ‘Lilly-Mae may have sickle cell’ I instantly broke down and told her she was wrong as I was already told she didn't have this condition. Following this a meeting was arranged for me to see a Consultant and to be honest I was in denial but then an urgent retesting was arranged and then on christmas eve 2016 it was confirmed my baby had full Sickle Cell type SS. My heart sank but I needed to no the truth.

This condition has affected family members and friends of mine too so my thoughts would often fixate on the hard times my Lilly had ahead. I’ve apoligised to my baby a thousand times over as you can‘t help but feel guilt that u’ve made ur perfect baby have this horrible condition that there is no cure for. Us parents always want to protect our children but how could I protect her from something no one had control over!

At 3 months old my baby started medication. 13 months on and 6/7 hospital admissions later here we are sharing her story which hopefully may help someone. Lilly unfortunately has experienced infections, a crisis, sepsis and splinic sequestration. However we believe in God who gives both of us strength daily. I’m not saying its not hard some days because it is. However how I see it there is always someone else worse off than you. I will be forever greatful for my princess and the happiness she brings to me and all who know her. She really is my everything. Sickle cell affects so many familes however I just do not feel their is enough support or awareness raised regarding this condition.

We need to raise more awareness of this condition and fund research to enable familes to be supported but also to find further treatment options and one day to find a cure that is accessible for everyone not just those that can afford it. Just because its not a condition you can see on the outside daily does not mean this charity is not as worthy of support as any other.

I have not recieved support other than from my family and friends. Therefore considering World Sickle Cell day in June I want to do a fund raising event that everyone will be welcome to attend and all funds will go to research into Sickle cell. Once confirmed I will update details of this event and hopefully you can come along.

If you have managed to read all of this thank you very much. I have not shared this story for sympathy but to show that this condition is real and affects so much people.

Any support would be amazing. So Let's work together and help make a change and educate each other.