A year ago, little Ava Roberts visited St Oswald’s Hospice for the first time. For Children’s Hospice week, mum Judith tells Alison Goulding what the staff mean to her and her family.
DAYS after Ava was born, her mum Judith knew something was wrong.Her second daughter arrived through a healthy labour but at three days old developed severe hypoglycaemia.
Tests showed Ava had suffered brain damage, and life for the Roberts family changed beyond recognition.
“We were very close to losing her but she stabilised and when they ran tests she had brain damage and severe epilepsy,” said Judith, 35.
“She is registered as blind, though we think she can see something.
“We think she has Cerebral Palsy too but we’ll know more as she gets older.
“I later found out that she’d needed some help to breath when she was first born but they don’t know why she became hypoglycemic.
“She was a brilliant feeder at first and there was no reason to be concerned. We took her home and she stopped feeding.
“As the night went on I was worrying so I rang the hospital.
“They said it was normal and I accepted what they said but I knew deep down she wasn’t alright. I just didn’t know how awfully wrong it had gone.”
Every morning and night Ava, two, has anti-epileptic drugs to combat dozens of seizures a day.
She is pump-fed through a peg tube and has regular physiotherapy. Ava needs constant care because she can have a fit at any minute and Judith has given up her job as a secondary school teacher to care for her full time.
Judith said: “She needs everything that a child needs and then some.”
A year ago, Ava became one of the 50 children from across the North East who have respite breaks at St Oswald’s Hospice in Gosforth.
Judith, who lives in Chester-le-Street with husband Mark, Ava and daughter Molly, four, said: “I’d heard of hospices but I never thought they’d apply to me.
“I thought maybe we wouldn’t qualify but because it’s a life-limiting condition she did meet the criteria. We first came here after a particularly bad time last year.
“Ava had bronchiolitis and had been on oxygen for a week and we were on our knees. The nurses and the consultant rallied round and told us we needed a care package.
“I hadn’t considered it and I thought ‘Am I a failure as a mam?’
“After a while I came to terms with needing that time. I’ve spoken to many parents who also struggled with the idea.
“In the beginning I stayed with her because I was anxious about leaving her.
“Everyone is so kind and friendly. It’s a nice atmosphere and the nurses are brilliant. They know exactly what they are doing so you can relax when you go home.
“You get to have time for the rest of your family, yourself and for sleep.”
After such an intense start, leaving Ava at the hospice was a wrench for Judith.
She said: “The first time I came I was tearful. One of the other mams caught me in the car park and said she knew what I was going through. She told me it would get better and then it would be brilliant. It did get easier, everyone was so supportive.”
St Oswald’s Hospice has a purpose-built children’s service. Sam Patterson has worked with the fundraising team there for three years.
She said: “The children who attend are surrounded by an excellent team of medical staff but there’s a brilliant social side too.
“We arrange the stays so the children are with their peers and it’s a home from home.”
Because the children’s service is for children with very complex needs, it is fitted out with a lot of specialist equipment.
Sam explained:“There’s a sensory room where they can relax or have a disco.
“We have big purpose-built baths with hoists so it’s much easier for bathtime to be fun. They do baking, crafts, makeovers, cinema trips, computer games, pretty much all the fun things children love to do.
“There are lots of gardens too so they can go outside and explore.”
For Sam and the rest of the team, the emphasis is on enjoying the present.
Sam, 27, said: “We’re a hospice and the children who come here have life-limiting conditions but we look at it as ‘what can we do right now to make your life better?’ so they can have fun and adventures.
“We had one little boy who started coming here who wasn’t expected to reach his first birthday and he’d spent most of his life in hospital.
“He came here and it was the first time he’d spent time outside and felt the sun and the breeze. Obviously no one knows what the future holds but his parents are adamant that coming here has really helped him.
“He is just coming up to his second birthday now.”
Ava stays at the hospice for two nights each month and is a favourite with the staff.
Judith said: “Ava really loves it here. She gets so much attention, everyone fights over her. She’s very relaxed here. She goes in the sensory room and it’s like her holidays.
“She likes music therapy and singing. If you want her to smile you just sing to her.
“Her mobility isn’t brilliant but she can roll from side to side.
“She’s such a happy child and that makes it bearable. I couldn’t bear it if she was unhappy.”
Judith and husband Mark are now fundraising to take Ava to Therapies4kids in Fort Lauderdale for specialist treatment.
So far they have raised £9,500 of the required £12,000 through a charity night at Sunderland Greyhound Stadium, coffee mornings, collections and radio appeals.
Judith said: “One man rang to say he’d heard my interview on the radio.
“His three kids are grown up and healthy and he said it got him thinking how lucky he’d been.
“He’s raised £3,800 for us by signing up for the Belfast Marathon. His brother-in-law pledged £2,000.
“I feel so tearful that people are so nice. One of my former pupils, who has cerebral palsy, did a sponsored row. Someone else is doing the Coast to Coast in a day for Ava. Durham Lions gave us £500.”
The Roberts’ will travel to America this summer so Ava can undergo specialist muscle therapy.
Judith said: “I heard about it on Surprise Surprise. My mam was watching and rang me. There was a little girl on exactly like Ava and she’d been over. They put them in something similar to what astronauts wear to stop their muscles wasting.
“It’s an Exoskeletal suit that holds the body better so the child has a chance to do things normally without having to readjust themselves all the time. The little girl on TV went and learned how to sit up, roll over, stand for a short time and smile properly.
“If that happens to Ava that would be amazing but I have to be careful not to get my hopes too high.”
Judith’s wish is that Ava will one day be able to sit up unaided.
Judith said: “My main hope is that she continues to be happy, but it would be a massive high if she could learn how to sit up.
“When I go to the supermarket I can’t take her because I can’t put her in the trolley – I would have to push her wheelchair, too, which isn’t great.
“It might not sound like much but it would change her life.”
To find out more about Ava’s fundraising team, look for F.A.I.T.H (For Ava’s Intensive Therapy Hope) on Facebook.
Be a hospice hero
Children’s Hospice Week runs until Friday, May 3. St Oswald’s Hospice, which cares for Wearside children, will round off the celebrations with a Superhero day.
It costs £9.5million to run St Oswald’s Hospice each year, £6.5million of which must be fundraised. There are many events through which to support the hospice, including the Midnight Walk on Saturday, July 6 and the Great North Run on Sunday, September 15.
To find out more about joining in or organising your own event, go to www.stoswaldsuk.org or call 246 9123.