Football club aims to score for March family with visit to CBeebies Land
A football club has launched an appeal to help send a little girl and her family to CBeebies Land at Alton Towers as a respite from daily life.
March Town FC want to raise £800 so Olivia Constable and her mum Clarissa Duggan and brother Oakley can enjoy time at the children’s attraction once she has recovered from major brain surgery.
Tuberous Sclerosis Complex is a rare genetic condition that causes mainly non-cancerous (benign) tumours to develop in different parts of the body.
The tumours most often affect the brain, skin, kidneys, heart, eyes and lungs.
Olivia is effected in all areas and the tumours have resulted in her being diagnosed with a type of epilepsy known as Lennox-Gastout Syndrome, which in layman’s terms is an uncontrollable, drug resistant epilepsy.
Olivia’s organs are covered in tumours causing not just the epilepsy but high blood pressure, polycystic kidney disease, potential heart failure as she gets older, Speech and language delay, global development delay, autism and sensory processing disorder.
Yesterday (Thursday) Olivia underwent a seven hour brain operation at Great Ormond Street Hospital in London to hopefully cut the number of seizures she suffers daily.
Her mum Clarissa, and dad Dan, were both by her bedside as she came round from the much needed operation – known as corpus callostomy, which is a procedure that divides the corpuse callosum.
This is the main fibre bundle that connects the right and left sides of the brain to each other.
In the normal brain, electrical activity flows from one side to the other. In children with epilepsy, abnormal electrical activity can also travel across this connection.
Dividing all or part of the corpus callosum reduces this abnormal flow from one side of the brain to the other, and so can help children with certain kinds of epilepsy.
Clarissa said: “Nothing ever gets Olivia down and she takes it all her stride. Olivia is five years old and copes immensely well with it all.
“She has a special button in her belly for her medication as she refuses to take it orally and there is a lot of it to go down daily. She’s also often fed by the tube due to lack of interest in her food.
Previously Olivia has had a vagus nerve stimulator (VNS) fitted. A VNS is a device used to treat seizures when seizure drugs are not effective and surgery is not possible.
VNS consists of a pacemaker-like generator that is implanted in the chest wall and is programmed by the physician to stimulate the vagus nerve in the neck.
Unfortunately the device failed to help Olivia, who attends Highfield Littleport Academy, and she has been in and out of hospital as a result of her seizures.
As a result she has been on the waiting list for brain surgery to help control her epilepsy for the past couple of years, and her epilepsy has been becoming increasingly dangerous causing the hospital admissions.
Olivia is a great fan of many of the CBeebies programmes particularly Bing and The Teletubbies. The football club is hoping to raise the money so she and her brother and mum can enjoy a short break and have a bit of fun away from the worries of everyday life.
You can follow Olivia’s journey on Facebook: Olivia’s journey with tuberous sclerosis Complex.
There is a collection tin at the March Town Football Club, or donations can be made via Justgiving.
