Report by Simon Angear , Content Editor
Tuesday, April 17, 2012
A DETERMINED Weston schoolboy will jet across the Atlantic for life-changing surgery later this month – bringing to an end his 13-year quest to learn to walk.
The Mercury has previously reported how Michael McKenzie was born with one leg substantially shorter than the other, leading medics to suggest that amputation was the only realistic way forward.
Michael’s mother Ginette refused to accept that gloomy prognosis, and embarked upon a tireless mission to help him overcome the disability.
The family home was sold to raise money towards costly treatment, and celebrities as diverse as Graham Norton and Paul McCartney supported an initial £80,000 fundraising drive.
Michael travelled to all corners of the globe for expert consultations and pioneering surgeries, which saw his leg bones broken, stretched – and ultimately lengthened by a record-breaking 31 centimetres.
The procedures proved so successful that last year Michael was able to walk unaided for the first time in his life at the age of 12.
It’s been a painful and expensive process. But the end is now in sight.
On April 26, Michael and Ginette will fly to the United States for what they hope will be the Priory Community School pupil’s final operation on May 1.
Doctors will create the knee and hip joints he needs to improve mobility in his surgically-built leg, giving him the independence to live the life of a typical teenage boy.
Ginette said: “When he was born, Michael’s right leg was like a thalidomide leg. His foot was level with his left knee, and he had no hip joint and no knee joint.
“Doctors said they didn’t know if he’d ever be able to stand up, let alone walk. They told us to amputate because Michael would never be able to use the leg.
“But as a parent, while you are not an expert in the condition, you are an expert in the child. What’s right for one person might not be right for others.
“This can mean there are times when you feel you are not being listened to, or you’re fighting the whole world - but we never gave up.”
More than half of the cost of the latest medical bill – which topped $110,000, even before adding the cost of return flights to Florida, physiotherapy, accommodation and more – has been met by the Weston-based Axentis Michael Charitable Trust.
The fund was set up by Grand Pier owner Kerry Michael in memory of his father, and has gone on to help a number of people and causes around the town.
Kerry said: “Following the death of my father, we set up the trust in his memory to support good causes, and I am delighted we are going to be able to help Michael in such a positive way.
“When I heard about Michael’s condition and I met him for the first time, I couldn’t believe how brave and determined he was.
“Michael is a bright young lad who just gets on with life despite a condition that would challenge the very strongest among us.
“I am sure that the many hundreds of people who support the trust would agree that Michael, and others like him, are exactly why they give so generously.”
World renowned Dr Dror Paley – who is familiar to Michael after performing the very first surgery on his leg nine years ago – will carry out two operations.
They will involve altering soft tissue and ligaments at knee and hip, creating 60 degree movement in each joint.
This will be a massive step, as at present Michael has just five degree movement in his knee, and none at all in his hip as his femur is fused to his hipbone.
Ginette said: “This close to the date we are very nervous and I can only say that in getting Michael to the best surgeon in the world I feel I am doing all I can as a mum to give him the best chance at a good quality of life.
“I would really ask for all the Mercury readers to have Michael in their prayers on May 1, as it is a very tricky and painful procedure.”
The 37-year-old, who lives in Weston’s Milburn Road, also offered a big thank you to the Axentis Michael Trust for making the trip possible – and for all the Mercury readers who nominated him for the trust’s help.
She said: “Michael’s condition is so rare to this severity we have never been able to be part of a group or register as a charity.
“When we saw the Mercury asking people to nominate a local individual whose life could be transformed it seemed like an opportunity tailor made for him.
“I was so worried though, as the amount we needed was so huge I thought they would feel they couldn’t help, so when I nominated him I stressed we knew we wouldn’t get the full amount from any one source and we of course weren’t expecting to – so you can imagine the shock when Kerry came to our house and offered us the full amount.
“I was totally blown away, it’s a moment me and Michael will never forget.”
Ginette says Kerry and the Grand Pier’s Liz Lewis have continued to be a big help with making arrangements as the date draws near.
She said: “They have wired money to the accommodation in advance so I don’t have to wander around Florida with thousands of dollars.
“They have organised a credit card with £2,000 on it so that if there are emergencies or complications we don’t have to worry.
“Also, no-one would insure Michael as we were travelling for medical reasons and I was getting quite stressed – but Kerry sorted all that out and paid it for us.
“It has all taken so much of the stress out of the arrangements – I can’t thank them enough.
“We would also like to thank the Mercury for telling Michael’s story with such compassion, and all the local people who donated before the Axentis Michael Trust stepped in.
“They have helped pay for our flights and medical supplies and cost of living while we are out there, so very much love and thanks to everyone who supported us.”
And of course, the last word should go to Michael, who told the Mercury he is looking forward to a future free from the pain and limitations he has been living with for so long.
He said: “Thank you very much to everyone who nominated me for the Axentis Michael award, and who donated to help me get this opportunity.
“I am very nervous but excited, and hoping I will soon be able to do more with my friends and be able to concentrate on more in school as I will be in less pain.
“I would like to send all my love and thanks to all the Michael family, Liz Lewis at the pier, and the Mercury – I will never forget the kindness they have all shown me in giving me this chance.”