“He is my inspiration.”
Proud mum Barbara Hall says everything she does is because of her precious son Tristan.
Tristan, who will turn seven in January, was not expected to live past the age of one.
But the brave South Shore youngster, who was born with Edwards Syndrome, has defied doctors’ expectations and the medical odds.
He is now one of the oldest living with the condition in the UK – 95 per cent of babies with the condition do not survive past their first birthday.
The rare genetic condition affects the heart and digestive tract and causes delays in growth and development. It causes frequent chest and urine infections and it is a constant battle for sufferers to remain healthy.
Tristan cannot walk or talk and relies on Barbara for 24/7 care.
Now Barbara, 40, has been inspired by her son to set up a centre to help other children with special needs.
Barbara is aiming for Tristan’s Light House – hoped to be based near The Manchester pub in South Shore – to offer a sensory experience to local children like her son.
Barbara said: “Tristan has a special sensory room with multi-coloured lights and a wall I’ve decorated with UV paint which glows under the lights and in the dark.
“There are lots of things hanging down from the ceiling for him to play with, different textures, things which make noise and he loves to come in here and have music on.
“After seeing how much he gets out of it, I felt I wanted to share that with other children.
“The Light House will include four rooms with different themes – a space room, a sea room, an avatar room and a multi-light room.
“It would be for all adults and children, especially those with special needs and their families, including their parents and carers.
“We will have music playing and everyone can benefit from the rooms, including adults – it can help especially with stress and relaxation.
“There are sensory rooms at places like Brian House, but the nearest dedicated centre like this, I think, is in Preston.
“We are in the process of getting everything organised, but we hope to open the centre next month.”
Tristan is still confounding doctors by his progress.
He has to have regular hospital checks and does have medical issues, such as kidney problems, thyroid problems and being susceptible to infections, but is generally doing well.
Barbara has decorated his sensory room with lots of photographs of Tristan from each year of his life – she is determined to make every day count.
Barbara said: “We try to make sure we pack in as many experiences as possible for him – mini-breaks, visits out, walks on the seafront – he loves it when the front is busy, he loves being outside.
“He’s just adorable. Everybody who meets him just falls in love with him.
“If I go to the shops without him, everybody asks after him and how he is.
“His heart doctor is also really fond of him and said last time he saw him: ‘the miracle continues.’
“He’s really taught me so much.
“Looking after Tristan has made me appreciate what I have and definitely changed my outlook in life.”
For more information, search on Facebook for Tristan’s Light House.