Worldwide legacy of 'amazing' teenager who defied the odds
An 'inspirational and loving' teenager who ‘overcame barriers every day’ will leave a lasting legacy across the world. Alex Connerty, 19, from Maghull, died unexpectedly on Wednesday (January 15) after living his life with an incredibly rare condition called Microcephalic Primordial Dwarfism Type II (MPD).
Alex was born in 2005 and just over a year later was the first child in the UK to be pre-diagnosed with the condition. At the time there was little information the doctors could give them about Alex’s condition and many questions asked by Sue and John were left unanswered.
For Alex, this meant he spent a lot of time in hospital with serious health issues. Doctors also told his parents Sue and John he would never be able to sit up or walk. However, Alex continued to defy the odds and started attending Summerhill Primary School in Maghull in 2009.
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Faced with so little information about their son’s condition, John and Sue set out on a mission to find out more information. In January 2007, the couple along with Alex met other parents and children with the same or similar condition in the United States of America.
They also spoke with medical experts about the condition. As this was all happening, they were being filmed by a TV production team for a future episode of the Extra-Ordinary People series.
When the story was aired for the first time in the UK, the producers of the series got in touch with them to say they had been contacted by parents and grandparents who had watched the show and thought their children and grandchildren had the same condition as Alex. Off the back of this, John and Sue, supported by friends, created the Walking With Giants Foundation to help other families like themselves and look into the causes of MPD.
The foundation has gone on to support families all over the world, fund further research and increase public awareness about the condition. Several conventions for sufferers of primordial dwarfism were also held by the organisation in Liverpool city centre.
Speaking about why they set up the foundation previously, John said: “Alex is so lucky to come from Merseyside because everyone got behind us. Now we want to use the Merseyside spirit and spread it across the UK. Some other parents may not be so lucky, with all the support we got from people, and we want to help alleviate their burden so they can get on with looking after their child.
“The Walking With Giants Foundation will allow children like Alex to reach their full potential in life and help make their wishes and dreams come true. We want to recreate that magical moment when Alex met youngsters like him by bringing the families together quarterly.
“This is so important because it will allow understanding and show them they are not alone. They will be able to share experiences and they will be able to help each other. We want to educate the general public about primordial dwarfism and eliminate negativity.”
The foundation is still going strong, with people in Merseyside and beyond supporting its various fundraising events. In December, it said via its Facebook page that it had raised £66,000 to support families and run the convention. The foundation added that the next convention would take place in Liverpool again this July, with 25 families attending from around the world along with specialist doctors and genetics teams from USA and Edinburgh.
Alex’s wider campaigning has continued to make headlines. Last May, the ECHO reported that the teenager had joined forces with schools, celebrities and local businesses to campaign for the reopening of the Rowan Adventure Playground (RAP) in Litherland, which was designed for people aged between 0 and 25 with special educational needs.
Paying tribute after his death, his dad John said on Facebook: "Sue and I are heartbroken beyond belief! Yesterday Alex, our handsome, inspirational son unexpectedly and sadly passed away. Alex mum, dad, your brother Michael, sister Jess, nan Margaret and Grandad Alec and all your other family members and friends are at a loss and already we all miss you so so much.”
"Since you were born you fought every day to live, you loved life and were starting to enjoy life to the fullest. We knew from early on that your life expectancy would be limited but you pushed your life expectancy to the extreme limits to the point we thought you would be with us forever!
"As parents, we are proud of bringing you into the world, we are proud of the way you overcame barriers in your daily life and more proud of the way you made everyone love you, due to your amazing personality, loving soul and kindred spirit.”
He added: “Son, you are at peace now, hopefully meeting up with passed family members and more importantly attending the biggest gig in the sky with all your PD friends singing 'All Together Now'. We always love you Alex. Your broken-hearted mum, dad and family."