Not having the right buggy to leave his Birmingham home put seven-year-old Tyler Hartley at risk of suffocation, loss of consciousness and even death – until Newlife The Charity for Disabled Children stepped in to help.
Tyler, from Perry Barr, has a rare and severe form of drug-resistant epilepsy called Lennox Gastaut syndrome. He has multiple seizures every day – at one point as many as 80 a week – and experiences five types of seizure, including two of the most serious kinds which can cause his small body to stiffen and jerk or make him suddenly lose control of his limbs and drop to the floor.
To help keep him safe when seizures strike, Tyler wears a helmet to protect his head and uses a buggy outside the family home. But the buggy he was using only faced outwards, meaning his mum, Rebecca, could miss the moment a seizure caused his head to drop forward and cut off his airway – with potentially fatal consequences.
Terrified of what could happen, Rebecca only took Tyler out when necessary, such as for school and medical appointments. That changed when another parent at Tyler’s specialist school in Sutton Coldfield recommended Newlife, which was quickly able to provide the right buggy for him.
Rebecca said: “There’s no doubt the buggy from Newlife has saved Tyler’s life. In this one Tyler can face me, so I can always monitor him, and it reclines and lies completely flat, so when he does have a seizure I can very quickly do everything I need to do to clear his airways and put him into recovery before the situation becomes worse.
“In his old buggy, Tyler faced away from me, and when he has a seizure, his head drops down, cuts off his airway, his chest muscles go still and his lips turn blue. It’s very scary.
“We were stuck in the house and missing out on so much. I knew we couldn’t continue like that, but the buggy Tyler needed was around £4,000.”
Tyler, who is also Autistic non-verbal, was an active four-year-old when he had his first seizure. Rebecca noticed his lips turn grey, his arms stiffen and his eyes roll back in his head. But because it did not look like the types of seizures often portrayed on TV, Rebecca did not immediately realise what was happening.
Three years on, Tyler now has a diagnosis for a condition Rebecca says has stolen her son’s childhood. He has significant brain damage caused by the seizures and the skills he had developed have now regressed, leaving him unable to dress and feed himself or ask for a drink.
“We still don’t know what the future holds. I’m a planner, but I have had to learn to live in the moment with Tyler,” Rebecca said. “Although we know he will have multiple seizures each day, they strike without warning, and we never know whether to expect four or 14. He will just suddenly keel over.
“At home I need to carry him to bed because the seizures leave him exhausted and he can no longer climb stairs – which isn’t easy as I’m only 5ft tall – but the new buggy means if they happen when we are out, Tyler can be reclined and sleep safely and comfortably while we carry on with the day. The buggy also keeps Tyler protected at school; it goes with him everywhere to ensure his safety.”
Now, Rebecca, Tyler and his 15-year-old sister Leah can go out into the community, visit new places and enjoy activities in the buggy which can tackle lots of different terrains, all while he is closely monitored. Just as importantly, Tyler can see his mum, giving him the reassurance he needs that she is there to keep him safe.”
Rebecca added:
“Despite everything Tyler is a very happy little boy who loves Hula Hoops crisps and apple slices. Now, thanks to this buggy we can now go out without so much risk. It’s made life so much easier!”
REBECCA, TYLERS MUM