A Scotter mum and dad are hoping to raise enough money to buy their son the medical equipment he needs to improve his quality of life and battle a host of serious health challenges.
Corey Madeley, now aged six, was diagnosed with cerebral palsy and a brain malformation called polymicrogyria when he was aged just one – before being diagnosed with epilepsy six months later.
Corey was unable to sit up or move around unaided and has needed intense physiotherapy ever since. He is now mobile and can walk short distances – but needs a wheelchair as he tires easily.
Sarah, Corey’s mum, said: “Corey struggles with extreme hypermobility so his joints are incredibly flexible.
“Along with this he has weak muscles. These alone cause intense pain and fatigue.
“His body cannot support itself efficiently and so he can fall and trip up easily.
“He will slouch a lot too if not assisted. This is causing his body to curve.
“His conditions are life-long and cannot be cured.”
After a difficult start to life, Corey was then diagnosed with epilepsy aged 18 months.
Sarah said: “We started medication immediately, but sadly it remains uncontrolled. Corey has absences that can happen at any time of day and last for any amount of time and this causes safety concerns.
“His seizures have progressed to the more serious clonic stage and are happening much more frequently.
“There are no obvious triggers or signs that one is about to happen. They can impact the rest of the day, causing tiredness and confusion and they can affect his memory.”
To help improve Corey’s quality of life, his family are trying to raise money to purchase equipment which will assist him.
Sarah said: “We are raising money to purchase a PulseGuard system. This is a monitor worn on the wrist or ankle and alerts when there are physiological changes such as increased heart rate.
“This would give us a way of ensuring Corey gets the assistance he needs immediately and massively reduces the risk of sudden unexpected death in epilepsy.
“The worry we currently have is huge.
“Something to help us understand what is going on and to care for him much more effectively would be phenomenal.”
Corey also requires a specialist car seat to assist him while he is in the car.
Sarah said: “Corey relies on the use of a vehicle to access school and to get to all of his many appointments.
“Having this seat would ensure he remains a part of the community and can live his life as his peers do.
“He can be involved in all family activities and we can go do things without such intricate planning.”
Corey is able to attend school and has an education and health care plan to ensure all of his needs socially, intellectually and physically are met.
Sarah said: “Corey is a happy and loving boy. He enjoys cuddles and will smile to show he is okay. He doesn’t have imaginative play, and is very literal, but he thinks anything Star Wars related is awesome.
“He has an older sister Caitlyn, aged 12, and a younger brother Charley, three, who adore him and play a vital role in caring for him.
“Corey has begun to notice he is different, but they support him so well.”
Sarah has had to give up her job to take care of Corey and her husband, Dominic, has reduced his hours.
She said: “We have taken a huge hit financially in order to put our family first and would do it again in an instant.
“Sadly that means we cannot manage to pay for these much needed items alone.”
To help raise further funds, Dominic is taking part in a sponsored beard shave and they are organising a family fun day in July with a band, bouncy castle and cakes.
n To make a donation to support Corey visit www.justgiving.com/crowdfunding/4-Corey