Elijah – One son, one Mum, one vision
Elijah Thomas is a bright 17-year-old boy with a playful glint in his eyes. He is adored, not only by his mum Kaddy, but by everyone who meets him.
In many ways he is a typical teenager, with a dry, wicked sense of humour, and doesn’t suffer fools gladly. His interests are many, including football, going to the cinema, people watching and watching nature programmes.
So what makes Elijah such a special boy?
1 in 65,000
When Elijah was born, Kaddy looked into the eyes of her newborn son and fell in love immediately.
He was born with a rare genetic disorder called Apert Syndrome. The disorder causes the fusion of the skull, hands, and feet bones. Typically this will affect craniofacial and limb development.
This was no surprise to Kaddy as she was also born with Apert Syndrome.
1 in every 65,000 to 88,000 babies are affected by the disorder and symptoms can also include hearing loss, affected speech, bulging or wide-set eyes, fused fingers and toes, and even a fusion of the spine in the neck. The life expectancy of someone with Apert Syndrome can be the same as someone without it, but a lot of medical attention is required. Early diagnosis, multidisciplinary management and supportive care can greatly improve the outcome for those babies afflicted.
After six months, a child with Apert Syndrome can have surgery on the skull to re-shape it and thus giving more room for and putting less pressure on the brain.
Elijah’s life-changing surgery
Surgery can play a crucial role in treating and managing babies with Apert Syndrome. The main goals are to alleviate the functional impairments affected. This aims to correct skeletal deformities, improve aesthetics, and overall enhance the child’s quality of life.
In order to address the risk of intracranial hypertension, it was recommended that Elijah underwent surgery. By remodelling and reshaping the skull, the brain will have the space to expand and grow normally.
Aged 18 months, Elijah went into hospital to have the life-changing surgery in order to relieve the pressure on his brain from the deformities of his skull.
It was life-changing, but not in the way that Kaddy would have hoped for. There were complications during the surgery, causing extensive brain damage.
As a result, Elijah needs round-the-clock care and Kaddy is his full-time carer.
Growing up grounded
Elijah has learned to cope with his afflictions. As mentioned before he has a wry sense of humour and he looks at the world around him with such positivity and glee.
However, as he has grown up, he has come to deal with regular trips to the hospital. Sometimes more than once in a single day.
Elijah is prone to tonic-clonic seizures, a form of epilepsy.
The tonic phase is where the muscles suddenly stiffen. His body becomes rigid, and his breathing is irregular or may even stop. This can last for around 10 or even 20 seconds.
The tonic phase can take the form of involuntary rhythmic jerking movements and the body writhes around uncontrollably. Excessive saliva production can cause foaming at the mouth.
The full episode can be disturbing and sometimes terrifying to watch, however, it is something that Kaddy and Elijah’s team of carers are only too used to. Sometimes on a daily basis.
An ambulance to the hospital and pain relief can alleviate the pain the seizures cause for Elijah until the next one.
Elijah the teenager
Although Elijah’s daily life can be unpredictable, Kaddy and her team have always treated him as a normal boy.
Birthday celebrations are something that needs careful planning.
A simple trip to London, one of Elijah’s favourite places to visit, can be a mammoth operation to organise.
Now 17 years old, he, like any teenage boy, likes his own space.
He will regularly throw Kaddy a look that means;
“I know I need looking out for, but I want to watch television in peace!”.
Typical teenager!
Kaddy’s caring collective
Kaddy knows only too well the stress of being a round-the-clock carer.
So much so that she has set up the Carers Collective. A unique support group for carers.
With millions of carers facing constant emotional, mental and financial adversities, Kaddy recognised that there needed to be a support for them.
A life raft in their sea of incredibly challenging and unpredictable lives.
A loved one who needs 24/7 care is the main priority for their closest family who become around-the-clock carers. Sometimes giving up their own lives for the cause. Their main aim is to help them live as comfortably as they can without choosing the option of a residential care home.
Now, there is absolutely nothing wrong with care homes. They do a great job, and most provide an excellent duty of care. But for some, it would seem an absolute last resort, or even not a consideration at all.
Instead, it is up to these strong, brave and loving people, to provide absolute care for their loved ones.
Kaddy’s collective mission
As Kaddy is aware, the life of a carer can be exhausting. Carers are prone to burnout as they work tirelessly and are too battle weary to navigate ‘the system’.
Kaddy’s Carers’ Collective offers support, including a six-week, solution-focused coaching programme. Specifically designed with carers in mind. This helps carers to become better equipped to care for their own needs, as well as the needs of those they care for.
This successful programme is run by a team of qualified experts, including psychotherapists and they have intakes several times a year.
Kaddy’s incredible conclusion
Every day Kaddy is thankful for having Elijah in her life - in many ways it's a miracle that he's still here. She has learnt so much from being his mum and as a result, being his carer and manager of Elijah's care team.
The best piece of advice Kaddy can give everyone is to look after yourself, pick your battles and take it one day at a time, after all, all we have is now.
Kaddy wants to grow carers collective to include more support for carers in the form of therapies and coaching, we don't chose the life we are given, but we can choose how we live it and how we take care of ourselves and those around us,
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