Manchester College staff and students are teaming up to raise money to send a disabled teen with a rare syndrome to a specialist retreat in America this June.
Michael Weir, who has captured the hearts of his fellow pupils and teachers at the college with his infectious personality and charismatic attitude, lives with the congenital disorder Apert syndrome that affects one in 160,000 babies.
The incurable condition causes the premature fusion of skull bones as well as fingers and toes.
Audra Thomas, Michael’s tutor, said: “The retreat brings together families from all over the world so they can share their experiences of living with Apert and find solutions to everyday problems.”
By promoting the trip on a crowd funding website, the 18-year-old’s carers hope that he will get the chance to partake in fun activities and therapy sessions uniquely designed for Apert patience at the beach retreat in South Carolina on June 10.
Audra told MM: “Michael’s childhood was difficult but he is realising that there are some good people who genuinely want to be his friend.
“He has become a popular and inspirational student who has touched the hearts of many people at the College.”
Though the former Child of Courage Award winner has no speech or sleep pattern, Audra, who will be accompanying Michael and his mother on the trip, has developed a strong bond and communicates proficiently with the Ardwick teen through signs and gestures.
‘MIKE’S AMERICAN DREAM’: His family are aiming to raise £4,500 so the Manchester College teen and his mum can make the trip to South Carolina (© Google Maps, with thanks)
“Michael and his mum, Ivy, would love to meet other people at the retreat who understand Apert syndrome,” Audra said.
“He’s an amazing young man and he’s just changed so many people’s outlook on life. Everyday he smiles and he makes you smile.
“Michael won the Child of Courage Award when he was four years old and even now he’s still shy. However, the exposure is helping him a lot because he’s now known throughout the college.
“To people shouting ‘how’s it going Mike’, he just puts his hand up and gives them a gesture.”
Michael’s home community, to the delight of his family and friends, has done its bit to sponsor the trip.
From cake bake sales, sponsored local supermarket bag packing sessions to a family pub crawl, the £4,500 target to send Michael to Myrtle is drawing closer.
Sixteen members of staff are taking part in the Great Manchester Run next month to raise sponsorship funds for the cause.
Apert syndrome is triggered by a rare mutation on a single gene. It is this mutated gene that is normally responsible for guiding bones to join together at the right time during a baby’s development.
However, babies who are born with the syndrome see the mutated gene fuse together prematurely in a process called craniosynostosis.
This results in extra pressure being put on the bones in the baby’s skull and face as its brain continues to grow inside the deformed skull.
Audra told MM: “Unfortunately with Michael he had multiple surgeries, that why he cant talk. He also has a hole In his throat that has to be cleaned and covered with a patch.
“Unfortunately the surgery didn’t go well so Michael has been left to deal with even more complexities than he originally would have had.
“But again he just plods on with life. He’s just so lovely, he makes me melt. He’s more like a little brother to me.”
You can help send Michael to the Myrtle Beach retreat here.
Image courtesy of Out of Touch, with inset from Manchester College, with thanks
