Charlie is nine years old and lives with his mum Laura, dad Simon, twin brother Bobby and younger brother Jude, in Surrey. As mum Laura explains, “Charlie was born ten weeks early, and as a result of poor utero development he was born with quadriplegic cerebral palsy and epilepsy.” Quadriplegic cerebral palsy refers to a specific type of cerebral palsy that affects the control and movement of the body, including all four limbs. Those with quadriplegic cerebral palsy may struggle to control their head and they often have connected conditions such as epilepsy, as Charlie does.

“Charlie is unable to walk and he is reliant on adult support for everything.”

                     

Daily life for Charlie and his family

“Home life can be tricky as Charlie needs constant stimulation and has a short attention span. It can be difficult when we’re at home, because as parents there are things we need to get on with, such as housework.”

Living with two brothers also means that daily activities for the family can occasionally be challenging. “Charlie has a new baby brother called Jude, who he absolutely adores, but it does make going out a struggle as Charlie needs to be pushed in his wheelchair and of course Jude needs his pushchair.” Charlie also has different needs and interests to his twin brother Bobby. “Bobby loves going to trampoline parks, playing computer games and going to the cinema. Those types of activities are problematic for Charlie.”

“Charlie has a number of medical appointments which can prove stressful to co-ordinate around his siblings and other family commitments.”

Though daily life can be difficult for Charlie, he enjoys a range of activities that bring him joy. “Charlie is a massive music and sports fan. He will watch any sport – from football to cricket. He loves them all and still talks about the time he went to Wembley to watch Tottenham play.”

“He also loves listening to live music and beams when there’s a marching band. He loves everything from Tom Jones and Fleetwood Mac to George Ezra and Ed Sheeran. It’s great to hear him sing song lyrics, especially because during the early years of his life he couldn’t talk.”

Education and support

Charlie currently attends a specialist school in Basingstoke. “He also attends Footsteps in Oxford for three weekly intensive physio sessions four times a year. They are often booked in the school holidays so that Charlie doesn’t miss too much school. It does leave little time for a family holiday all together though.”

Laura explains that Charlie has a social worker. “We also receive a respite allowance to help in the mornings as both Charlie and Bobby attend different schools that have the same start time.”

“When Charlie was younger we attended Ingfield Manor School for Parents so he could receive conductive education.” Ingfield Manor School for Parents is a service for families who have children between the ages nought to five. It specifically aims to help parents of young children with cerebral palsy and other motor learning difficulties. “We also regularly attended a playgroup at White Lodge and fun days set up via Sebastian’s Action Trust.” 

                   

Challenges for Charlie and his family

“Life is incredibly stressful. Quite a lot of friends will ask me to go away with them for overnight breaks. Things like that can be frustrating; due to Charlie’s needs it just isn’t possible.”

Laura explains that looking after Charlie can be difficult the older he gets. “As he is getting older he is getting heavier which makes it difficult for his transitions. Where lots of people say life gets easier as their children get older, I know we won’t experience that. We are heading towards a future of having an adult with special needs.”

Laura tells us that before Charlie and Bobby were born she used to work as a financial adviser. “After having the twins, one of whom has special needs, it just wasn’t feasible to be able to return to that line of work. I ended up training as a childminder to enable me to raise the boys and bring in an income at the time. I worked as a childminder for six years.”

“I took a significant drop in income after having the boys and it’s unlikely that I’ll be able to return to such lucrative work as Charlie’s needs will always come first.”

Laura has now set up a talent agency along with two other parents who have children with additional needs. “We understand that time off is required as a result.”

How we helped

“I heard about Family Fund through a friend who had already applied. The first grant we had was for a family break through Inspire. We were able to use it to go to the Isle of Wight for a week. Our second grant was also for a family break through Inspire and it helped fund a week’s break at a lodge in Eastbourne.”

                            

How it’s made a difference

As Laura explains, due her change in job when Charlie and Bobby were born, “unfortunately there just isn’t as much money as there used to be, especially to afford things such as family breaks.”

“These family break grants have enabled us to escape a stressful home life and medical needs. We can enjoy quality time together as a family, away from the distractions of daily life. Afterwards we always feel like we’ve reconnected as family. Precious memories have been made.”

“Thank you for supporting our family. We appreciate all you do for families like ours. It means the world.”

 Find out more about our grants and how to apply