A group is raising funds for a Spalding family looking help their six-year-old son learn to talk and control his body more.
Tymek Sienski, known as Tymi, is at the same developmental stage as a one-year-old, due to the numerous seizures and strokes he’s had as a result of the rare Sturge Weber Syndrome.
He’s unable to speak, feed or drink himself and, despite being a lively youngster, has a lack of movement in one side of his body that affects his balance.
As Tymi is liable to falls and needs medication within three minutes of having a seizure, he needs someone with him around the clock.
Other complications from the condition include glaucoma and epilepsy.
The Tulip Academy pupil was initially thought to be healthy when born in 2020, but one doctor recognised the birthmark on his upper face which is often a symptom of Sturge Webster Syndrome, a genetic condition that affects nerves in the brain.
Complications particularly began to arise after he suffered his first seizure when aged just eight months. At one point he was having around 40 seizures a day.
Two years ago mum Anna and dad Lukasz travelled to near Gdansk in their native Poland to have rehabilitation sessions, which they say, resulted in a marked improvement in Tymi including providing some speech.
But the family say a subsequent fall led to a cracked skull, followed by contracting meningitis meant he returned to being non-verbal.
A return trip was organised last year, but Tymi suffered a stroke at the airport and they couldn’t go, losing the money they’d paid for the trip.
The family have been unable to find similar therapy in this country and want to go there again to see if it brings another improvement.
“He lost everything he had learnt,” said Lukasz who has had to change jobs from an IT designer to a delivery driver so he can spend more time looking after his son.
“Someone must be with him 24 hours a day, even through the night.
“If he has a seizure someone has to give him medication within three minutes.
“Because of the way he is, including being unable to drink so we have to use a syringe to ensure he gets the huge amount of water he needs, it’s quite often he spills his medication too.
“He’s a lovely, busy boy and it’s wonderful to see him smiling.
“There’s no communication but he’s trying make you look at him and he likes contact.
“He likes moving objects around, especially putting them in his buggy which is his safest place in the world, he even takes it on the frequent trips to hospital.”
“He also has a blanket he loved which he takes to bed,” adds 15-year-old brother Max who his parents say Tymi adores and shadows. “When you see him smile it’s always worth it.”
Mum Anna said: “He’s a lovely, smiley boy who loves nature and wants to be outside.
“Even though he doesn’t speak, people say he’s still quite sociable.”
The Spalding group Stronger Together Community Support has set up a fundraiser and earlier this month held a sponsored walk to raise £3,000 towards Tymi’s rehabilitation.
The groups’s Anna Smolen said: “The event completely overwhelmed us with the amount of people who came to support us and Tymek.
“It was truly an amazing and emotional day for everyone involved.”
A Just Giving page is called ‘I’m raising £3,000 to help six-year-old Tymek fight for independence’.
