Being a child should mean running through the playground and playing with your friends. You should have no problems, no troubles and definitely no worries. But for Charlie and Oliver Essex, being a child is much more difficult. Each day they both face challenges they have to overcome that some adults, let alone children, would find testing.
Charlie and Oliver are brothers from the same family of 5 – made up of Mum Sarah, Dad Carl and their older brother Dylan age 11.
Both boys were diagnosed with different disabilities when they were young and these affect both of them in different ways. Simple tasks that most people find easy, like walking or jumping cause them daily pain and both require extensive support to get through the day.
Charlie, age 9, was diagnosed with Spastic Quadriplegic Cerebral Palsy at the age of just 10 months old. This occurs when a damaged part of the brain sends the wrong neurological messages. This condition limits normal development of motor functions, effects speech and causes muscle tightness.
Spastic quadriplegia normally affects the whole body, even though the name refers to the four limbs on the body. The facial muscles and the core of the body are also unable to perform their normal functions due to the intense amount of muscle tightness and strain.
Alongside this, Charlie has also been diagnosed with epilepsy, a condition that is commonly associated with Spastic Quadriplegic Cerebral Palsy, and one that causes unexpected fit episodes.
Because of his disability, Charlie struggles with everyday tasks like walking, sitting up independently, dressing himself, eating and being able to play with his brothers like other children of his age.
Charlie has endured numerous treatments over the years in order to help him and his family manage his condition. From physiotherapy, hydrotherapy, hip surgery and surgery on the nerves in his legs – Charlie has experienced it all, and at such a young age.
He has also had botox and a Baclofen pump fitted into his body which was put in place in the hope of reducing some of the tightness in his muscles. After the pump was fitted, Charlie experienced complications that meant he had to be rushed to hospital for a further two surgeries.
Charlie attends Saxon Hill Academy in Tamworth, a school dedicated to children with physical disabilities. Since attending there, and with the help of his parents, Charlie has been able to achieve some milestones that his parents were told he would never be able to do.
He has learnt how to talk, how to freely use the toilet and can even operate his electric wheelchair independently. Despite going through all of this, he has the most amazing smile on his face everyday and brightens every room he enters with his witty sense of humour.
Oliver Essex is Charlie’s 4 year old younger brother. At the age of 2 years old, Ollie was diagnosed with Duchenne Muscular Dystrophy. This is a fatal genetic disease most common in young boys. It damages and weakens the muscles over time due to the lack of a protein called dystrophin, which is necessary for normal muscle function.
The absence of this protein can cause problems with walking, breathing, swallowing and muscle coordination. Most individuals with muscular dystrophy lose the ability to walk progressively and eventually require a wheelchair.
Certain treatments may help to ease the difficulties that this condition brings, but as of yet, there’s no known cure for muscular dystrophy. the disease drastically lowers life expectancy and heartbreakingly, Ollie has been given a life expectancy of late teens by his specialist doctors.
Ollie has already began to deteriorate as a result of this disease and is currently receiving physiotherapy and taking daily steroids to help ease his already aggressive symptoms.
Ollie currently attends a regular school, but can only manage half a day, three times a week because his condition means he gets too tired and can’t manage any longer.
When Ollie’s condition deteriorates further, is likely that he will need a wheelchair. At this point, Ollie will attend Saxon Hill Academy like his brother, where the staff are trained to support children with similar conditions.
Recently, Ollie and his parents attended a hospital appointment and doctors believe he also has Celiac Disease, and is allergic to gluten, so follows a strict gluten-free diet. It is believed that this could be affecting Ollie’s growth.
Although Ollie is in pain every single day from completing simple tasks such as climbing out of bed, climbing onto a sofa or even a chair, he is a very energetic and determined young boy.
Because of their conditions, Charlie, Ollie and the whole family, cannot plan too far ahead in the future like most families, and take one day at a time.
Day to Day Life
Sarah & Carl, Charlie and Ollie’s parents are amazingly strong people. The tackle daily life caring for two disabled children, as well as looking after their third son Dylan. It is a huge challenge for them both but, no matter what life throws at them, they manage to get through it together.
Their oldest child Dylan has found it very difficult growing up with two disabled brothers that require a lot of care and attention, but he never complains and does his best to make them happy, helping out as much as he can.
Mum Sarah is unable to work because she is a full-time carer to both boys and this puts a lot of strain on the family financially. To overcome this, Dad Carl works long hours, seven days a week, rarely having any time off in order to support his family. As a result, they don’t get to spend a lot of time as a family.
“Life, day to day is really hard on us. My husband has to work 7 days a week to give us nice things as I can’t work. We don’t really get family time unless we have holidays.”Sarah, Charlie & Oliver’s Mum.
How HUHO Will Help
As a Tamworth-based charity, we are committed to supporting local causes that need it the most as part of our fundraising efforts. As part of this, every year Help Us Help Others hosts the Annual Purslow Memorial Football Tournament in memory of Anne-Marie Purslow.
This is the opportunity for HUHO, alongside local businesses and the local community to come together and raise funds for a specific, chosen cause. Last year, we raised nearly £9,000 for two local causes.
The money we raised allowed five year old Sofia Gardella and her family to experience a holiday of a lifetime to Disneyland Paris and 35 year old Claire Grady-Lennon was able to get vital funds for a trip to America to gain treatment for stage-four skin cancer.
This year, we are hoping to raise even more for Charlie and Oliver Essex, with a target of £10,000 to hit on June 13th 2020 via the football tournament in the day and, for the first time, an evening party on the night.
“It’s a pleasure to be running the charity fundraiser again to raise money for Charlie and Ollie. They are an extremely worthy cause and we hope we can reach the £10k to make a difference to their lives!”Jamie Lake, HUHO Trustee & Fundraiser.
One Step Closer to Planned Renovations
If we are successful in hitting the £10,000 fundraising target, Sarah and Carl have big plans for some home renovations that will aid the boys that they have been dreaming of for some time.
They would like to use the funds to build a new bedroom downstairs for Charlie complete with a wet room that has a hydro shower or bath. They have been trying to fund this for a while but just simply haven’t been able to afford it.
Sarah said, “Charlie loves his baths and the water is good for his muscles, but I can’t carry him up the stairs for it anymore. It’s something that would benefit Oliver too in the coming years as his condition progresses.”
“We would also love to have the garden done and made child-friendly so Charlie and Ollie can play with their toys. It would also mean our oldest son Dylan can play football – so that would be nice too.”
How You Can Help
There are a number of ways you can help HUHO support Charlie & Oliver Essex in this year’s fundraising efforts.
Enter a Team Or Attend On The Day
Why not get some friends together and enter a team in the football tournament? Not in to football? It should be a great family fun day regardless with kids activities, a bouncy castle, face-painting and much more! Why not come along? More details can be found here.
Feeling generous? Every penny helps! Why not support HUHO in our quest to £10k by making a donation on our Just Giving page?
We are always on the hunt for raffle prize donations. Can you offer a service as part of our raffle or do you know someone who can? Let us know!
When it comes to running our events, it’s all hands on deck! Can you offer your valuable time by volunteering to help in the day or on the night? Get in touch!
Spread The Word
If you can’t do any of the above at this time, that ok – you can still help us by sharing this event and getting the word out to as many people as you can.