October 1 2014 Latest news:
Tuesday, August 26, 2014
A ten-year-old boy suffering from a rare genetic disorder has been given a vital cash boost from a charity.
Calvin Mersereau, 10, of Dalmeny Avenue, Holloway was diagnosed with an abnormality in chromosome 18 as a baby, meaning that he suffers from hearing loss, significant learning difficulties and developmental issues.
But thanks to £7,500 from charity Jeans for Genes, via Chromosome 18 Europe, Calvin and his parents were able to attend a special conference to learn about the condition and how to make Calvin’s live easier.
Calvin’s mum, Miranda, 45, said: “We are eternally grateful for the work of Chromosome 18 Europe, they provide us with a huge amount of information that even doctors at Great Ormond Street [children’s hospital] don’t have.”
“Attending the conference allowed us to measure our journey emotionally, we met parents with newly-diagnosed children and we were privileged to meet parents caring for adult children with the disease.
“Although their children might have different symptoms, we all have similar experiences to share. The charity has been brilliant in making this possible.”
She added: “Chromosome 18 diseases definitely need a lot more awareness. It’s not like autism or down’s syndrome, the ratio of support for the important work of Chromosome 18 Europe reflects the relatively small number of people affected.”
The conference, held in Manchester last month, was only the third of its kind ever held in Europe.
It showcased the latest research into conditions and looked at ways to help improve the lives of those affected by it, including workshops on how to deal with difficult behaviour.
The £7,500 paid for crèche costs for Calvin, who attends the Bridge School, in Hungerford Road, Holloway.
Knowing he would be cared for in a safe and understanding environment allowed his mum and dad to attend workshops throughout the event.
Jeans for Genes day, on September 19, is an event to help children like Calvin and thousands of other sufferers of genetic disorders.
For a free fundraising pack, by visit www.jeansforgenesday.org.