Childhood cancer charity was 'incredible support system' for Edinburgh girl after years of tests and misdiagnosis
Ellie Beattie was only nine years old when she started experiencing searing pains in her legs, leaving her wheelchair-bound. After four years of tests and misdiagnosis it was finally discovered that she had an inoperable brain tumour.
Now 13, the teenager who has pineoblastoma and leptomeningeal disease, both particularly aggressive forms of brain and spine cancer, has undergone a series of chemotherapy and radiotherapy to treat her cancer.
Cclasp is a charity offering support to families coping with childhood cancer in the Capital and was set up by a husband and wife from Leith whose seven-year-old son was diagnosed with leukaemia 25 years ago.
Valerie Simpson and her husband Bill founded Cclasp in 1994 and have become permanent fixtures at the hospital over the last quarter of a century, supporting families as they battle through the ordeal of childhood cancer.
Mrs Simpson said: “We really only meant to start a self-help group, run it for six months and then pass it on, but somehow we are still here 25 years later and it’s been the privilege of a lifetime.”
The charity offers both financial and emotional support to help families collect happy memories and also offers a vast array of helpful inside knowledge to worried parents.
Cclasp is made up of parents and grandparents who have lost loved ones to cancer which makes them uniquely placed to offer emotional support as well as first-hand, parent-friendly knowledge to overwhelmed and often sleep-deprived family members.
'Shocked it was Stage Four Cancer'
Ellie’s mum Elaine, 38, from Deans in Livingston, said that she struggled for years to get her daughter the correct diagnosis.
She said: “When we finally got Ellie’s diagnosis we were relieved that we had found an answer but totally shocked it was stage four cancer, you never expect to receive that news.
“The type of cancer she has is hereditary and I was tested and we found out that I carried the gene. I felt terrible because I was ok while she was suffering in the worst way imaginable.”
She said: “The scariest moment of the treatment was when Ellie lost all of her memories while going through radiotherapy.
“We were rushed to intensive care in Sick Kids, she couldn’t remember me, herself or anything.
“She has gained most of her memory back now but she still has no recollection of starting treatment.”
Describing the support from Cclasp, she said: “Valerie has been an incredible support system, she is absolutely brilliant. Whenever I am in hospital with Ellie she comes and visits us and I am always on messenger to her asking questions.
“After Ellie’s six-week course of radiotherapy she got something called ‘radiotherapy fatigue’ and it was a very, very challenging time but I was able to speak to Valerie the whole way through.
“If I’m having a down day she helps me the way she helps all the families on the ward. We are a tight-knit bunch as everyone in treatment spends a lot of time there and you get to know each other.
“The hospital is really well set up for smaller kids with the arts and crafts and clowns but teenagers get a rough deal, there is not really anything for them to engage with.”
“Cclasp bought an iPad for Ellie to use in the hospital to keep in touch with her friends. It’s been brilliant because it’s helped keep her in touch with life outside of the hospital.”
The charity also helped with a free taxi to and from hospital.
Ellie’s family want to focus on making happy memories.
The charity has funded trips for Ellie allowing her to spend quality time away from the hospital with her mum and dad, Roy, 51, a taxi driver in Livingston, as well as brothers Kyle, 28, Scott, 23, and sister Rachel, 21.
One of the highlights was a trip to Seton Sands which allowed Ellie and Elaine to forget about cancer for a while and spend quality time with each other.’
Elaine said: “We went for two weeks to Seton Sands and all the family got to come and spend time with Ellie.
“It also gave Ellie and I time for just the two of us, walks along the beach, playing the Xbox and cuddled up watching films, it was very calm.
“The holidays have been so important because for those days we don’t have to think about cancer, we all know it’s still there, but it’s easier to forget about at these special times.”
Trips like that are too costly for families coping with the added costs of having a sick child, but Elaine said that the best memories are often the smallest, least expensive things.
She said: “One of the best things we have been able to do is go for a day out at Flamingo World. Ellie just absolutely loved it – I won’t forget that day.”
Couple Inspired by Son's Leukaemia
Cclasp (Children with Cancer & Leukaemia Advice & Support for Parents) was founded in 1994 by husband and wife Valerie and Bill Simpson after their son Robert, then seven, was diagnosed with leukaemia.
The couple watched as their son went through a gruelling seven months of chemotherapy followed by radiotherapy and a bone marrow transplant from older brother William.
The family recognise how lucky they were that William was a match as they saw many children in similar situations die looking for a donor.
Robert pulled through and now aged 31, he lives next door to his parents in Leith with his wife Megan and twin boys Corey and Dillon.
The couple never forgot the battle their family faced and have dedicated the last 25 years of their lives to creating a service they wish was available to them during their time at the Sick Kids.
They are preparing to open the new Cclasp centre located opposite the new Sick Kids building in Little France.
Funded through a £1m donation from The Howat Foundation, the purpose-built centre will provide support to families and children experiencing childhood cancer or leukaemia.
With a rooftop garden, sensory rooms, quiet spaces, a family suite, toddler room, playrooms, games rooms, informal cafe, and party rooms, the facility offers an invaluable haven of peace and hub of support for those in challenging times.
The centre opens this year.