Dexter and the XXYY UK Everest Challenge.
Donation protected
My name is Chris and I am Dexters dad.
Dexter has a rare chromosome disorder called 48XXYY syndrome.
I am doing a virtual walk to Mount Everest via The Conqueror Challenges app, Everest Challenge (real walking, virtual mountains). Which is a 40 mile walk, equivalent to the distance between the Tenzing Hillary Airport to the base on Mount Everest, to help raise funds for the XXYY UK support group.
48 XXYY is a chromosome anomaly that affects a very small percentage of boys globally and whilst our counterparts in the US have been studying this for a number of years and have amassed a substantial body of knowledge on the condition, leading the medical and social studies, in the UK the condition is relatively unknown, un-diagnosed and most importantly unsupported.
Physical symptoms include tall stature for their age, hand tremor, leg ulcers, elbow abnormalities, curvature of the little finger (known as ‘clindactyly’), stretchy joints (known as ‘hyper-mobility’), curvature of the spine (known as ‘scoliosis’), significant dental problems, flat feet, low muscle tone, low or no testosterone. Young children might to slow to crawl or walk or have difficulty picking things up.
If you are in a position that you are able to give a little it will be greatly appreciated.
Many thanks to all and stay safe!
Dexter has a rare chromosome disorder called 48XXYY syndrome.
I am doing a virtual walk to Mount Everest via The Conqueror Challenges app, Everest Challenge (real walking, virtual mountains). Which is a 40 mile walk, equivalent to the distance between the Tenzing Hillary Airport to the base on Mount Everest, to help raise funds for the XXYY UK support group.
48 XXYY is a chromosome anomaly that affects a very small percentage of boys globally and whilst our counterparts in the US have been studying this for a number of years and have amassed a substantial body of knowledge on the condition, leading the medical and social studies, in the UK the condition is relatively unknown, un-diagnosed and most importantly unsupported.
Physical symptoms include tall stature for their age, hand tremor, leg ulcers, elbow abnormalities, curvature of the little finger (known as ‘clindactyly’), stretchy joints (known as ‘hyper-mobility’), curvature of the spine (known as ‘scoliosis’), significant dental problems, flat feet, low muscle tone, low or no testosterone. Young children might to slow to crawl or walk or have difficulty picking things up.
Neurological and mental symptoms include developmental delays, speech impairment, behavioural issues, social communication disorders, anxiety disorders, depression, learning disability, infertility, mood swings and outbursts and autism spectrum disorders.
If you are in a position that you are able to give a little it will be greatly appreciated.
Many thanks to all and stay safe!
Organizer
Chris Ackerley
Organizer
