A SPECIAL Christmas Cracker Tea Party is being held to help a toddler from Waringstown who has a medical condition so rare, he is the only child in the UK who suffers from it.
Ben Johnston (2) has a condition named pons hypoplasia - which affects how his brain transmits signals to his body.
The condition means that little Ben, who has a twin brother, Leo, is ventilator-dependent 24 hours a day and has a tracheostomy, enabling him to breath via a tube.
His mum, Ciara told the ‘MAIL’ that Ben is a “absolute pleasure”. “He’s so bubbly. The doctors had said that he wouldn’t be able to sit without help, or hold his head. But he can.”
Ciara, along with Ben’s dad, Andy have established a charity in their son’s honour to help ensure he has everything he needs as he grows up.
“Because Ben is the only child in the UK with this condition, the NHS cannot supply us with everything that he needs. We started Ben’s Fund and it’s a registered charity. So far we’ve raised £5,000.”
Ciara revealed that Ben has a specially-adapted buggy, which can accommodate his ventilator.
The party - in aid of Ben’s Fund - will be held in the constituency office of Ulster Unionist MLA Jo-Anne Dobson on the morning of Friday, December 14, from 10.30am to 12.30pm.
Mrs Dobson said: “Ben’s Fund was founded in June this year and provides help to parents and guardians of fully ventilated and trached children in Northern Ireland.
“The inspiration behind the charity is two year old Ben Johnston from Waringstown, who at such a young age relies on a tracheostomy and is ventilator dependent 24 hours a day, seven days a week.
“I first met Ben and his parents Ciara and Andy when they contacted me when I was a Craigavon Councillor. Knowing their enthusiasm and positivity towards helping families in a similar situation to themselves I am extremely supportive of the aims of their fund. Ben has achieved so much in his young life and is now helping others who are going through a similar situation.
“Through his charity Ben and his parents are helping children who have been discharged, or who have recently been discharged, from regional pediatric intensive care.
“Anyone who has a child who is dependent on new medical technology will know the day to day struggles and challenges which this entails for mums and dads locally, and indeed across Northern Ireland. As well as the increased household bills there are transport arrangements to be made and equipment to be purchased to make life more bearable.
“Any help which can relieve these pressures is always welcome and that is why donating to Ben’s fund is so important because that help goes directly to the families affected.
She added: “A small donation can go a very long way indeed, and I would encourage people to call into my office at any stage in the morning of Friday, December 14, to support the Tea Party, or to call in at any time to buy raffle tickets for the fantastic hamper which has been donated by Heather Saunderson of Truly Gifted in Magheralin and other fabulous prizes. The hamper is on display in my office at the moment.”
Mrs Dobson’s office is located at 18 Rathfriland Street, Banbridge, BT32 3LA, and further details are available on the Ben’s Fund website at bensfund.co.uk.