Meet Henry Barber-Riley, aged five, local ‘poster boy’ for the Jeans for Genes Day campaign.
Henry, who lives in Lutterworth with mum Laura, dad Brian and brother Oliver, has a rare genetic condition known as episodic ataxia type two (or EA2).
For Henry, the condition results in regular episodes - up to three times a week - of a severe lack of balance, sickness, significant visual impairment and, during very bad episodes, slurred speech.
“It’s almost like he’s drunk - that’s the nearest parallel I can think of” said artist mum Laura (35). And in general he struggles with motor skills, so while his reading is pretty good, he has problems with writing.”
His condition can also result in “challenging behaviour” sometimes, says Laura.
After a tricky first term, Henry has settled in well at the very sympathetic Sherrier C of E primary school in Lutterworth, where his brother Oliver (seven) is also a pupil.
EA2 is so rare that the paediatric consultant neurologists treating Henry have never come across a case before, said Laura.
From birth Henry’s illness went largely unnoticed because there were very few easily recognisable symptoms, except for his eyes rolling up into his head.
“But by the time Henry was two years old he started having more severe episodes” said Laura.
Since then it has taken several years and a lot of internet research from Laura and husband Brian, a distribution warehouse manager, for Henry to be correctly diagnosed.
“This research is actively encouraged by Henry’s doctors “ said Laura. “They are always keen to hear how other doctors across the world are approaching the treatment of the condition.”
Now five-year-old Henry and his family are helping to raise awareness of children’s genetic disorders with the UK children’s charity Genetic Disorders UK and its fundraising day, Jeans for Genes Day.
Jeans for Genes Day 2015 is on Friday, September 18, and everyone is invited to wear their jeans to work or school in return for a donation.
For more information, visit www.jeansforgenesday.org