Twin boys with GSD1a
On 1st July 2016 into the Jones family arrived two lovely (if premature) little boys, Harry and Eric. At that point the family were unaware that the twins had both inherited GSD1a, a condition that meant they were unable to access sugar from the glycogen stored in the liver. This problem can very quickly lead to hypoglycaemia, and if severe that can lead to fits or seizures and even be life threatening.
One twin battles on with GSD
Sadly, in December 2016 the family lost Harry, the eldest twin. Eric is still living with GSD on a daily basis. He requires two-hourly feeds and regular monitoring during the day to keep him safe.
8 year old Amy plans Fun Run
Eric’s amazing big sister Amy, who is 8 years old, decided to plan a 2k Fun Run at her school, Cromer Road Primary in the London Borough of Barnet. She organised it with her friend Summer, age 7, and with the help of the head and the assistant deputy head. The aim was to raise money for AGSD-UK and Cancer Research UK (having lost her grandad to cancer in 2015).
The Fun Run took place on Monday 17th June, with around 100 children taking part and everyone having a great time. Good job Amy and Summer!
Amy’s mum Sarah writes
“Amy beat her target but her fundraising page is still open. She would be so pleased if even more people could donate to this cause and help find a cure for her adored little brother. If you can, please donate and leave a personal message for Amy.”
Photo: Eric and Amy, best of buddies.