Kiya

Fourteen-year-old Kiya has MELAS, a mitochondrial disease, and at one point, her parents Rebecca and James, were told they wouldn’t be leaving the hospital with her.

On the outside, Rebecca says you wouldn’t know her daughter was poorly and describes her as amazing, strong and skilled. But on the inside, her muscles are weak, her memory is failing, and she has seizures. Some days, headaches and dizzy spells make it impossible for Kiya to get out of bed.

Since January, the family has been supported by us, mainly benefiting from outreach care from our Family Support Team.

“Until the age of eight, Kiya was completely healthy and we didn’t know there was anything wrong,” said Rebecca. “She was doing horse riding, gymnastics and cheerleading and she has had to give everything up. Living with it is awful and it will get progressively worse. She could get to a point where she won’t be able to move or even open her eyes. We just don’t know.”

Kiya’s symptoms began in March 2020, just before the Covid pandemic, with intense headaches which were followed by seizures. She was referred to a neurologist and as MELAS was suspected, she underwent a lumber puncture and a muscle biopsy.

“We had to wait a year for the results,” said Rebecca. “It was agonising. In the meantime, I had been researching MELAS and praying it was something else as I knew there was no cure or treatment.

“When the results did come through, it was during lockdown, and I was told over the phone. I was sat in my back garden and at that point, my world fell apart. I felt like my heart had been ripped out. I thought how am I supposed to carry on living knowing what we know.

“As time goes on, we just get on with it but now she has more poorly days than good days. She knows she will always be ill. It is really hard for her as she can still remember everything she could do. But she is such a fighter, and is so outgoing and chatty.”

Kiya, who has three siblings Cooper (10), Dougie (seven) and two-year-old Murphy, had her first stay at our hospice in January.

“Kiya stayed on her own and couldn’t wait to get rid of me. She loved it so much and didn’t want to come home. She wanted to live at Rainbows.

“She is obsessed with horror films so she was able to watch them in the Cinema Room while having a massage and she loved it. She made a friend and they played computer games together, which was lovely.

“At Rainbows, Kiya knows she has somewhere she can go and be herself, have a great time and be really supported. She has always been so independent and this disease has taken an element of that from her.

“It is in Loughborough, and it is a long way for us to go, but it is so brilliant that even if one opened in Spalding, we would still go to Loughborough. We think that highly of it. And I know that our Family Support Worker, or someone from Rainbows, is on the end of the phone if I need it.”

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