Levi was a happy, gorgeously cheeky, loving little boy, with big brown eyes and a big smile to match. He loved Power Rangers, playing with his friends, cheese on crackers and lots of snuggles and huggles from me and Grandma. He was also a very proud big brother of his baby sister Layla.
My beautiful boy began suffering from headaches and feeling dizzy when he was six years old. We became more and more concerned as Levi became more unwell. Doctors kept insisting it was ‘nothing serious’ and ‘probably migraine’. How I wish they had been right…but we needed them to prove they were right by giving Levi a CAT scan, after all how can you know for certain what’s going on inside someone’s head without looking?? Sadly our experience of fighting for a diagnosis is not uncommon within the world of brain tumours. A scan revealed that my
brave little Levi was not suffering from migraine, but from the deadly effects of a tumour on his cerebellum and brain stem. He underwent a 12 hour operation the very next day. I carried him down to the operating theatre and smiled as I kissed him, telling my baby how loved he was and that the doctors were going to make his ‘poorly’ better. I told him everything would be fine and not to worry one tiny little bit. Then cried and cried after I handed him to the surgeons who were going to try and save his life.
The following weeks were a living nightmare as we stayed by Levi’s side, willing him fight, to live, to come home. But it was not to be. On the 29th August just 6 weeks after diagnosis, my beautiful Levi left his little body that couldn’t be fixed and journeyed with two mighty angels into Heaven. Our lives stopped with Levi’s last heartbeat. Heartbroken doesn’t even come close to the utter loss and devastation we felt. We had lost Levi and now we were lost…our hearts shattered into a million pieces. Levi was the very centre of our world – how could a little boy who was loved so much be gone? How would we even breathe without him…
I believe losing a child is the worst possible thing that could happen to a parent. It isn’t something you ‘get over’, ‘come to terms with’ or will ever be able to think about without your heart shattering into a million pieces over and over again. It is something though that you have to learn to live with. This is a choice you make and the choice to find hope takes you on the most challenging journey you will ever experience.
One of the ways we have journeyed that path is by setting up a charity in Levi’s precious memory. Levi’s Star was born on 8/8/08. We are a registered charity, supporting children and young people diagnosed with a brain tumour across Yorkshire. For every child/young person we help, I feel we are gaining a little piece of justice for Levi, ensuring Levi’s sad, sad story is a catalyst for change.
We are also proud to work in partnership with Macmillan, delivering a support service in Yorkshire for children/young people who have survived brain tumours but have been left with a range of difficulties that can for example affect areas such as learning and cognition, social skills, anger management and physical difficulties. Our specialist SEN teacher works with schools to offer bespoke 1-1 intervention to help children with brain tumours develop skills and reach their potential. Working with 19-25 year old brain tumour survivors involves our support worker running social clubs, signposting/helping young people access other relevant services in their area and supporting young people to help ease social isolation and develop independence. We are also funding PHD research into how survivors of brain tumours are supported within education, to help inform good practice and to help ensure quality of survivorship. This is all in your name my precious little boy, just look what you have inspired!!
Levi, I know you are safe and happy in your heavenly home but we long for the day we can kiss your beautiful face, huggle you tight and NEVER let you go. Until that day arrives, we will keep Levi’s Star shining on brain tumour children who are fighting the Power Ranger fight the way you fought. We will help them and support them and their families as much as we can. Levi we salute you and all the little fighters who have to walk that path. We are committed to trying to make that journey easier in some way.
Levi I hope you are as proud of Levi’s Star as we are of you. Sending you eternal love and huggles, wrapped in moonbeams and stardust.
Love you forever, Mummy, Grandma and Layla xxx XXX xxx