Just after her first birthday, my daughter Shakeerah was diagnosed with a brain tumour. She wasn’t expected to survive.
Shakeerah is now six. She’s a bundle of joy, but her disability has impacted on almost every area of our lives.
She has a tracheostomy, uses a ventilator overnight, is fed through a plastic tube in her tummy, and bears scars around her head from numerous operations — 45 and counting.
I didn’t think about carers before Shakeerah came along. To be honest, I probably wouldn’t have thought it a particularly hard way of living. Never would I have imagined how complicated it is, or how relentless the battle for support.
On top of the 24/7 care, endless appointments, and military planning needed to master medication timetables, equipment or even leaving the house, there are a plethora of forms to complete, referrals and regulations to navigate.
Although councils have a duty to provide care for disabled children and their families, budget cuts mean these services are harder to find. Yet they are our lifeline.
Short breaks provide children like my daughter with a safe environment, allowing her to interact with other children and participate in activities tailored to her abilities.
Shakeerah comes home with biscuits she’s decorated, plants she’s potted, and a huge grin. And I feel recharged and ready for the next challenge.
We need your help.
The Children’s Trust, the charity that provides Shakeerah with short breaks, has launched The Little Break Appeal.
Please help us to raise £100,000 to ensure that families get the support they desperately need.
You can donate online at www.thechildrenstrust.org.uk
The Children’s Trust