Leona lives in Dundee with husband Paul and six-year-old daughter, Elena.
“Within the first 24 hours of Elena being born she was diagnosed with Down’s syndrome. A day later, Elena was also diagnosed with a congenital heart defect which led her to undergo heart surgery at nine weeks old. Three years later, Elena was then diagnosed with autism.
“Learning about Elena’s conditions came as a huge shock. Elena went into heart failure at five days old. She was getting sicker every day until her heart operation. I had to take a career break for the first five years of Elena’s life due to her 24/7 medical needs.”
Family life with Elena
Now that Elena is older and attending school, Leona is able to return to work part-time.
“Elena attends a Special Educational Needs (SEN) hub within a mainstream school. She’s in a classroom with five other children and really enjoys school.
“Since Elena struggles to sleep through the night, she mostly sleeps in my room with me. Her poor sleeping pattern has a knock-on effect with our family. Paul has to sleep in the spare room to ensure he has a good night’s sleep for work, and sometimes I go to work on two hours sleep which can be difficult.”
“We don’t receive any respite. Childcare is difficult, due to Elena’s complex medical needs. She is non-verbal and uses an Augmentative Communication device to help her, and wears nappies all the time. We do receive some support from Elena’s grandparents, but it gets harder as they grow older.”
“If me and my husband are socialising, we have to do it separately. We can’t ever go out together. We’ve never had a night away or gone out for a meal just the two of us. Elena’s needs are so much that she requires one of us to be there for her the whole time.”
Leona added: “Elena is a real character, she’s fun and a thrill-seeker. She rarely has any meltdowns, despite not being able to communicate certain things, which can be frustrating for her.
The Take a Break grant
Leona has been supported by the Take a Break scheme for several years, most recently enabling them to visit a Haven holiday site.
“The on-site swimming at Haven was brilliant! There were water slides which all three of us could go down together. We get on a lot better as a family when we’re away from the stress of home life.”
“The grants create a sense of relaxation which allows us to feel more refreshed as we go back to our caring responsibilities.”
The family also previously used the scheme for some outdoor play equipment. Leona said: “The swing and climbing frame we were granted have been a great addition to our garden. Not all parks are accessible for children with conditions like Elena’s. It’s really good that she can go out into the garden and we’re able to assist her. The equipment helps with her sensory needs and allows her to calm down. The equipment also means that we can sit out in the garden, relaxed, knowing Elena is enjoying herself in a safe environment.
“Family Fund and the Take a Break scheme have been amazing. It has really helped us for many years. Also, the application process is really easy and straightforward. It’s not as daunting as some other forms that we’ve had to fill out.”
