Parents of a severely disabled baby boy have launched a £250,000 fund-raiser to fund a specialised home to suit his complex needs.
Thomas and his twin brother James were born by Caesarean section four weeks early in March last year.
Since then James has been the picture of health while it has slowly come to light to parents Hannah, 28, and John, 36, Greaves that Thomas has serious health issues.
Now the Clayton-le-Woods family have set up a charity HelpforTom to fund-raise for a house which will suit all of his physical needs.
The Guardian is putting its weight behind the campaign to help the family reach their fund-raising goal.
After they were born both Thomas and James had to spend two weeks in the neonatal ward for tube feeding, with breathing problems and sepsis infections. Thomas also had jaundice.
The twins appeared to recover but when the boys were five months old Hannah and John began to notice that Thomas was not focusing his eyes on their faces and appeared distant.
When they took Thomas to a specialist at Royal Preston Hospital the Greaves were told that Thomas might have cerebral palsy.
Hannah said: “My husband and I were very shocked and upset for Thomas.
“It took us a few days realise what the doctor had said and that it is a life-changing disability.”
Thomas also suffers from a movement disorder called dystonia which is when his muscles contract uncontrollably.
It means that he fits, bending his whole body backwards up to 40-50 times a day.
“Since he’s been five months old Thomas started to stretch his body backwards and his limbs into an arched shape,” said Hannah, who cares for Thomas full time.
“He screams and goes bright red. This happens day and night.”
When Thomas was almost a year old he suffered an episode and took a turn for the worse. Hannah and John rushed him into hospital.
MRI scans showed that although Thomas’s skull was growing his brain was not.
“They don’t know what is going on with his brain,” said Hannah. “It is still the size of a newborn’s, it won’t grow.
“His limbs are everywhere. He’s also at high risk of choking because he cannot swallow or use his mouth properly.”
Now John, who is studying a BA Hons in archaeology and anthropology, and Hannah have launched a fundraising drive to help them move into a home which will better cater to his disability needs.
“Our home at the moment will not satisfy Thomas’ complex needs,” said Hannah. “There is not enough space for his aids, specialised prams, standing frames and he has no bedroom at our current home.”
“The home we currently live in is small, cramped and narrow. Thomas desperately needs his own bedroom as he struggles at night and his brother cannot sleep due to the noise and night time care disturbances.
“Without a new home, Thomas cannot thrive, his movements and help maintain his dignity, hygiene and mobility is at serious risk.”
To donate go to https://www.justgiving.com/crowdfunding/thomas-greaves