Erin loved Robin House…
Robyn Boyd’s favourite letter is A. Not just any A, it’s the one that she has designed. It is pink and has yellow squiggles.
It has pride of place in her bedroom and she made it in celebration of her best friend – her big sister Abbie.
It has a special significance for the ten-year-old because it was one of the last things she did for Abbie before her sister died.
“A is for my big sister Abbie. We both like pink and yellow and I like doing squiggly lines. Abbie really liked it,” she says.
Abbie was aged 11 when she died on Wednesday, August 2, this year.
It was the moment her family, mum Lisa, dad Allen, Robyn and brother Sean, knew would come, but they would never be prepared for. When she was aged only two, Abbie, the eldest of the three children, was diagnosed with metachromatic leukodystrophy (MLD), a degenerative condition that slows down muscle tone.
Within months of being diagnosed she lost her ability to talk and eat.
Throughout her life she needed 24-hour care and towards the end the condition had left her bedbound.
Despite the devastation of Abbie’s death, mum Lisa, 36, says it was the perfect end for their daughter because she was at a place the family, from Castlemilk in Glasgow call their second home – Children’s Hospices Across Scotland’s (CHAS) Robin House.
Lisa said: “If someone dies in a hospital or home you have less control.
There’s always someone visiting Earlier this year the Boyd family helped to launch CHAS campaign Keep The Joy Alive. Dad Allen, mum Lisa and children Abbie, Robyn and Sean have been supported by the charity for the past eight years and the two sisters were part of the design team that developed the new CHAS alphabet for the campaign. But since then, family life has changed… or at the door. But at Robin House they let us do what we needed to do in our own time. In a hospital you walk in with someone and you have to leave without them. But at Robin House we were still there with Abbie after she died.
“And that was amazing, it was comforting.”
“We wanted to leave with her as a family for her funeral,” dad Allen, also 36, said. “It’s what we wanted and it is what we got.”
CHAS support offers families the opportunity for their child to stay in their rainbow rooms after they have died. It is a normal bedroom but has a special cooled mattress which allows the family to spend time with their child and say their final goodbyes in their own time.
Abbie stayed in the rainbow room for eight days.
She explained: “We’ve said to our family and friends that if we didn’t have the rainbow room things would have been harder for us.
“If we were in hospital we wouldn’t have got the chance to be with Abbie. But when she was in the rainbow room we had her right to the end, we could be with her. I think that is what made it perfect. It’s not enjoyable but it’s comforting because you knew that she was still there and we were still there as a family.”
Robyn and brother Sean, nine, also spent time with Abbie.
Sean said: “I could go and see Abbie whenever I wanted. It was good, I wanted to be with her.”
The room has inspired him to create a beautiful tribute to his big sister.
Earlier this year, CHAS gave the children they care for a task – to create the new CHAS alphabet which would form part of the charity’s new fundraising campaign, Keep the Joy Alive.
Every child had the opportunity to pick their favourite letter and draw their favourite things within. CHAS now want people across Scotland to do their CHAS alphabet name tag and message of support.
They want to collect 15,400 name tags – one for every child who has a life-shortening condition.
Sean and the children at CHAS hope to turn all the tags into a giant laser projected rainbow to light up the skies of Scotland in honour of Abbie and all the children CHAS have cared for and still need to reach.
He hopes the rainbow will be seen by people across the country, raising awareness of the charity, and the services they provide.
Sean said: “It will mean lots of people will get to see it and get to know about CHAS, which is good.
“If more people know about CHAS they can get more money and it means lots more families can go to Robin and Rachel House, like we did.”
And for the Boyds, there will be one letter that will stand out – Robyn’s A.
One of Robyn’s favourite memories of CHAS is when she made her letter for Abbie.
Memories are providing the family with the strength and comfort they need as mum and dad admit to struggling to build a new and different life without Abbie.
Allen said: “When we were first told about Robin House, for me it was like we were giving in, giving up hope. But it proved me wrong because it made Abbie’s life, it made her love her life more than we could have done for her.
“We did so much at Robin House. The kids were on a TV programme, Abbie was in a model show, we turned on the Christmas lights at Lomond Shores. We’d never have been able to do that without Robin House.
“Yes, we were in the unfortunate situation that we had to use Robin House but we were fortunate that it was there for us.
lisa said: “Over the years eight and a half years, we have made so many memories – we’ve got over 2000 photos from Robin House, can you imagine that?
“And it is those memories that will last for us all.
“It’s lovely that we are doing this final thing for Abbie. I’m really pleased and we’ll all be there with our family to see the rainbow.”
Please help CHAS to reach more families like the Boyds by making a gift today. And send CHAS your alphabet name tag, included in today’s CHAS insert, so Sean, Robyn and the children at CHAS can light up the skies of Scotland in tribute to Abbie and the 15,400 children who have a life-shortening condition. When mum and dad Gemma and Jamie talk about their six-year-old daughter Erin, their faces light up but there is a sadness in their eyes.
As they talk of the many times Erin spent with her family at the hydrotherapy pool or days out at Blair Drummond Safari Park, they smile.
The couple have come forward to talk about Erin, who passed away in April aged only six, and the happy times she spent at Robin House in Balloch.
Along with their other children, Brendan, nine, Cara, three, and two-year-old Megan who were all supported by the team at Robin House.
Erin was born with paralysed vocal chords and at just a day old she had to have a tracheostomy.
“We knew straight away that something wasn’t right and within 24 hours Erin had her tracheostomy,” said mum Gemma.
“But we quickly realised that was just who Erin was, with that and her other needs. Her disability never held her back and the love and joy that our wee girl had outweighed any health problems.
“She was our Erin, our daughter, our world.”
But it took parents Gemma Connolly and Jamie McAdam some persuasion before they took their first steps through the door of Robin House with Erin.. Gemma said: “When we were first approached about help from