Sharing the news of SNAP’s work and how the charity puts families first, the sixth issue of our magazine is out now for families, supporters…
“Having somewhere to go, where she can be effortlessly Ava, is a gift.”
Ava, nine, has a series of very complex medical needs including hydrocephalus, cerebral palsy and epilepsy. She is blind and is a wheelchair user, needs round the clock care and frequently has to be admitted to hospital.
Ava was born six weeks prematurely, and all seemed ok until Liz and husband Dan were about to take her home from hospital when it was discovered she had severe brain damage which the couple later found out was from an infection Liz had caught during pregnancy.
“It’s one of those bugs healthy adults can carry and never know they have as it does not affect them but to an unborn foetus it can be devastating,” explained Liz.
Having already had a healthy child – son George, three when Ava was born – Liz was determined her daughter would have the same experiences.
“I took Ava to all the toddler groups to which we had taken George. But it was pointless. She got nothing out of them.
“Her vision impairment teacher suggested we go to SNAP and I was reluctant. Not because I was in denial that Ava had disabilities but I think because I did not want to see the future.”
Yet rather than fear Liz was greeted by a blanket of comfort and constructive help when she arrived at The SNAP Centre in Brentwood.
“My anxiety melted away the minute I walked through the door. Ava was no longer the child who was the odd one out; here she was an equal. She had a peer group. It was the first time I really saw her able to play as all of SNAP’s toys were especially designed for children like Ava. Everything was specialised.”
Liz was matched with another mother who had a child with similar needs to Ava’s and the pair soon found they had a lot to talk about.
Liz explained, “I felt a huge weight lift from my shoulders. It made me realise that although Ava was not going to have a life anything like George’s, she was going to have a life. This was a real turning point for us as a family.
“Going to SNAP for Ava is like going home. It is the only place we can take her that meets her needs. When Ava goes to SNAP she is with children she has known for years, plays with toys designed for youngsters like her and can take part in sensory sessions which she loves.”
The charity not only helped Ava, and her parents but her older brother too.
“George had always been very protective of and anxious about Ava. When he started school he was worried something would happen while he was away from the home and did not want to join any after school activities.
“But after much persuading he attended a summer holiday activity camp at SNAP for siblings of children with special needs. He loved it as they had tremendous fun and he was with children who were living in similar circumstances to himself.
“This made his confidence soar, and when he went back to school he signed up for two clubs.
“As a family, SNAP has given us so much help over the past eight years. I do not know what I would have done without them.”
Credit: Nicola Taylor
“SNAP have also provided George with family counselling for his anxiety about his sister, Ava. Our lives are quite unpredictable as Ava is frequently admitted to hospital and George at one point was having nightmares and was desperately worried that Ava would not be here when he came home, and SNAP helped him deal with those fears.”
Founding members Hilary Needham and Paula Hills explain their drive to start a support group