Alex Connerty, from Merseyside, taught the world about the rare condition called Microcephalic Primordial Dwarfism Type II (MPD), associated with brain and skeletal abnormalities
A teenager hailed as an “inspiration” for his tireless activism around disability has died.
Relatives of Alex Connerty, who had the rare condition called Microcephalic Primordial Dwarfism Type II (MPD), are heartbroken after the young man’s passing on Wednesday.
A charity Alex helped create has carried out tireless research into MPD and its causes. Alex’s subsequent activism captured the hearts of the nation.
MPD, characterised in 1982, is associated with brain and skeletal abnormalities. Although research into it continues, MPD is thought to be extremely rare with statistics in the US suggesting it affects just one in three million people.
Alex shone a light on it and the challenges it presents, including curious stares from strangers. Yet, speaking when Alex was just a toddler, his mum Sue described her son as “a sociable child with a great personality” – traits that he continued to boast for the rest of his short life.
Speaking after Alex died, his dad John, of Maghull, Merseyside, said: “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 fried 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 was 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!”
Alex “overcame barriers” presented by MPD, reports Liverpool Echo. The publication also says Alex defied doctors, beating paralysis, several collapsed lungs and stomach surgery in the months after his birth in 2005.
John’s emotional post continued: “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.
“The following days, weeks, months and years to come are never ever going to be the same. They say time is a great healer but you were loved so much that there is not enough time in our lifetimes to get over your passing and the deep hole in our lives which has appeared, that will never be filled, even as that time goes by.
“We also have many many happy memories that we can remember you by that could help the loss we have but with these memories come heartache as we cannot create new ones, which we want so much.
“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.”