Tax Appeal 2017

When my daughter Isabella was born she was chubby and beautiful with a full head of hair. She was very alert and rarely cried. I thought she was just perfect. But little did I know, my perfect world would soon be turned upside down.

Amid the sleepless nights over the first few weeks of Bella’s life, I become very concerned. Birthmarks were appearing over her tiny body right before my eyes. As a first-time parent I wasn’t sure what to expect, but my mother’s instinct was telling me something was very wrong.

When I should have been at home bonding with my baby, I was seeing countless GPs and paediatricians. Everywhere I turned my concerns were dismissed or misdiagnosed. I was becoming increasingly stressed and struggled emotionally with the constant knock backs I was getting at every turn. Why would no one listen to me?

After what seemed like an eternity of searching for answers, Bella was finally given the devastating diagnosis of Neurofibromatosis (NF). With no family history of the condition, this was going to take all of our strength as a family to cope with the challenges that lay ahead.

The marks on Bella’s skin are now the least of my worries. Wherever a nerve ends in her body, a tumour might form. I broke down when doctors recently found two new tumours on Bella’s vertebrae. And whilst this was devastating, we knew this was just the begining and the first of many tumours that Bella might experience in her life. NF is an unpredictable disorder with the continual threat of these tumours growing and impinging on her spinal column and elsewhere. Not knowing how this will impact on her life in years to come is one of the most overwhilming aspects of NF.

Despite the enormity of Bella’s diagnosis, I have so much to be grateful for.

Bella is a normal toddler in just about every way. She is adorable, energetic and cheeky. She loves swimming, dancing and ice-cream. She is strong and brave and full of kindness. We treat every day as a precious day together. I am so lucky she is mine.

It is impossible not to worry about Bella’s future. There is literally nothing I can do toprotect her from the progression of this disorder. I have  no choice but to be strong for my daughter and to go through life, one day at a time.

I am extremely grateful for the Children’s Tumour Foundation. They have been there since the day one of Bella’s diagnosis, giving advice and support, attending hospital appointments with us and updating us on their quest to find a cure for NF. We would be absolutely lost without them.

Your support for the work of the Children’s Tumour Foundation is vital. Your donation will give hope to families like mine who need it most.

Thank you
Rachel Skelton

Download the full story here