A STRING of awareness events to raise the profile of a rare genetic condition has achieved its funding target midway through the weekend.

Three-year-old Harrison ‘Harri’ Evans from Newbridge has Williams Syndrome, a congenital condition which affects one in 18,000 people.

Sarah Bennett-Evans, Harri’s mum, and her friend Hannah Beard have organised three days of events for the Williams Syndrome national awareness weekend and fundraise for families affected by the condition.

“The awareness weekend is to raise awareness and funds for Williams syndrome,” said Mrs Bennett-Evans, 34, of Homeleigh, Newbridge.

“The funds go to supporting other families affected by the condition and more research into the condition as it is so rare and misunderstood.

“We have three events planned – on Friday we had an event at Harri’s school - Tynewydd Primary – with a non-school uniform day.

“This afternoon is the Afternoon Tea for Harri which has a soft play area for the kids, competition as well as tea and cakes.

“On Sunday, we are doing a sponsored walk around the grounds of Tredegar House.

“Anyone who wishes to can sponsor Harri to do his sponsored walk or just come and join for a fun day out.”

The crowdfunding page for Harri has already raised £220, passing the target of £200 with one day of the awareness weekend to go.

The condition was only recognised as a syndrome in 1961 and the Williams Syndrome foundation started with regional groups in 1981 before its first convention in 1992.

One year later, doctors discovered the cause of the condition – a deletion on the seventh chromosome which allowed for more accurate diagnosis.

“There are approximately 3,500 people with the condition in the UK,” added Harri’s mum.

“In Harri’s case, it means he has developmental delays, a heart condition and other medical issues as well as sensory and sociability problems.

“On a daily basis, Harri struggles to communicate as he has only recent started talking and he struggles with certain sounds like if a motorbike goes past, his brain considers it to be the same as pain and he struggles to walk for long distances because he lacks the elastin gene.

“He does have dental issues which makes it hard for eating and a few problems with pain as well as eye sight issues.”

Mrs Bennett-Evans added that by supporting the awareness campaign, it will help other families affected by Williams Syndrome.

“The main aim is to raise more awareness of the condition as it is so rare and it can be misdiagnosed,” she said.

“We want to make sure that the families with the condition or those who could be affected by Williams to have the information that they need.

“It will also help the NHS and the doctors to look into the condition much more to give us the support we need as a family.”

The Walk for Williams Syndrome will be taking place at Tredegar House at 2.30pm on Sunday, May 21.

To sponsor Harrison visit justgiving.com/fundraising/Sarah-Bennett-Evans1.