When Neave Durkowski was diagnosed with Angelman Syndrome in November, aged 18 months, it rocked her family’s world.
But her parents were resolved to make sure she fulfilled her potential.
She brings a smile to everyone’s face who meets her and is a complete joyTim Durkowski on his daughter Neave
So to raise money and awareness for the condition, Neave’s dad Tim is walking 100 miles with no sleep across the South Downs.
Tim, 33, from Ferring, Worthing, has set up a JustGiving page which has raised £460 with a target of £1,000. Proceeds will go to Assert, the Angelman Syndrome, Support, Education and Research Trust.
In a post on the page, Tim said: “Last year we had a devastating shock when our beautiful daughter Neave was diagnosed with Angelman Syndrome.
“We were told she won’t ever talk, she will have severe learning disabilities meaning she will always need caring for and probably wouldn’t be able to walk.
“The only silver lining is that people with AS are very happy and always laughing.
“She brings a smile to everyone’s face who meets her and is a complete joy.
“When she was diagnosed we were directed to Assert which is the English charity for AS. They have offered us continued support and connected us with other families helping us to realise we are not alone.
“Some friends and I decided we would set ourselves a challenge to raise some money for this worthy charity which relies totally on donations. The challenge is to complete the walk in one go, 100 miles from Winchester to Eastbourne, with no sleep. Anything you can give would be greatly appreciated.”
Angelman Syndrome is a rare neurological genetic condition which affects one in 18,000 people. In Neave’s case, it is caused by a deletion on the 15th chromosome.
As well as developmental delays and poor speech and motor skills, more than 80 per cent with the condition develop epilepsy.
Neave’s mum Heather, 32, said: “Neave is very loving with family and always smiling. However she does suffer with anxiety and when in new places or with unfamiliar people she gets very distressed.
“There is ongoing research into curing AS. This drives us on – that and seeing Neave working hard everyday to develop her skills, skills we take for granted.”
The sponsored walk will take place on June 25. To donate, click here.
To find out more about Angelman Syndrome visit the Assert charity’s website at angelmanuk.org.