WATCH: Inverness schoolboy battling cerebral palsy says ‘not every disability is visible’
An Inverness teenager, who was diagnosed with cerebral palsy when he was just five-years-old, now wants to raise awareness for disabilities that aren't always visible.
Cerebral palsy is a lifelong condition that affects your movement and co-ordination. It's caused by a problem with the brain that develops before, during or soon after birth.
From the moment Lennon Howell (13) was born, his parents knew something wasn’t right.
After previously having six other children before Lennon, his mum Gillian, could tell there was a difference.
Lennon was induced 13 days early and was born blue.
The family waited for five years before Lennon was old enough to have a general anaesthetic in order to undergo an MRI scan.
The MRI scan showed shadowing on two cortexes of Lennon’s brain, subsequently diagnosing him with brain damage and cerebral palsy.
Growing up, Lennon struggled with physical mobility and had to use a wheelchair or he would suffer the consequences of pushing himself too hard.
Gillian said: “We made his wheelchair into the batmobile, which he loved, but as he got older he distanced himself from using the chair because of some kids.”
A few years later, Lennon’s parents did some fundraising in order to purchase him an electric wheelchair that would make his mobility easier.
To their surprise, they raised almost £2000 which managed to buy Lennon the wheelchair he needed, as well as an electric adjustable bed, similar to those used in hospitals.
Despite all the physical challenges Lennon has endured, he continued to push through every doctor's expectation.
Lennon was told he wouldn’t be able to ride a bike as a child, but through sheer determination, he was able to do so by the age of 10. Other tasks, such as drawing, writing, cutting his own food and using scissors once seemed an impossible task until Lennon proved everyone wrong.
Gillian said: “They might tell him what he’s not going to do, but he’ll make sure he does it.”
Lennon has always struggled with his weight as a result of his condition and has been back and forth to the Birnie Child Development Centre in Inverness to help him with physiotherapy, in addition to his diet.
Gillian said: “Something needed to be done as his weight was dangerously low for a long time.”
Lennon said: “Other kids have noticed that I’ve got the condition and have maybe made a couple of comments about my weight.
“I have always wanted to be a bit heavier.”
Children with CP can have difficulty feeding which can lead to underweight and undernourished conditions, which can impact their growth and development.
Due to this, Lennon was recently given a nasal gastric tube to ensure he is given an additional thousand calories during the night, as well as food intake.
Gillian said: “Even in the last eight weeks we have noticed a really big difference. It started off slowly, but he has gained over 8kg now. Now he is a safe weight.”
Sadly, Lennon continues to struggle with extreme muscle cramps, for which Gillian needs to massage him frequently for, and is often woken up as a result of the pain.
He said: “When I have a bad day, I have to take the day off school because I just can’t do anything. Sometimes I even cry, that’s how painful it is.”
Lennon’s dad Stuart described his son as ‘brave’, adding: “He has taken it all with a pinch of salt and has never complained about the situation, he has just pushed forward and gotten on with it.
“Ever since he was little, he has never let it hold him back.”
However, Stuart said it is ‘heartbreaking’ to see Lennon miss out on activities he’s passionate about, like playing football because he ‘can’t exert himself that way’.
When talking about what she thinks needs to change for children to be recognised with hidden illnesses, Gillian said: “There is a lot of ignorance. I think there needs to be more awareness.”
Lennon added: “Before I told people, they didn’t really know I had anything wrong with me, so I think it’s good to make people aware of disabilities that are not visible.”
If you would like to share anything about hidden health issues, email annabelle.gauntlett@hnmedia.co.uk
