Determined teen does A-levels from her hospital bed after her body ‘shuts down’

A teenager refuses to let her chronic illness get in the way of her exams by taking her A-levels from her hospital bed. Ella McKee, 17, suffered years of pain, but the last fight saw her body “stop”, her mother says.

And while in the past she recovered to a point, she is currently unable to leave the hospital because she is so sick. Her mother, Joanne McKee, said: “It has devastated us. She has been bad for seven years.

“We thought she was doing poorly before this admission but now everything has changed and she is very unlikely to get better,” she told LeedsLive. Joanne, who says she spends 11 hours a day, seven days a week in hospital, added: “She still managed to get some amazing GCSE results and is now trying to do her A levels from her bed.

“She has an infectious smile and a cheeky nature. I want to see that side regularly instead of the pain and tears I see every day. I can’t let her story end here. Someone, some part, can find a beautiful end for us.”

Ella, who is from Tingley, was first diagnosed with severe myalgic encephalomyelitis (ME) and chronic fatigue syndrome at age 11. Following this diagnosis, the former ‘fit and healthy girl’, now spends much of her time bedridden in Leeds General Infirmary.

Joanne said her daughter’s bladder “closed” in 2019 and she was also diagnosed with postural tachycardia syndrome (PoTS) in 2021 – an abnormal increase in heart rate when sitting or standing. Additionally, she has been stricken with a number of urinary tract infections and is now completely dependent on tube feeding.

Joanne said: “My beautiful daughter Ella was a fit and healthy girl. She loved sports and gymnastics and would always be on the move and full of energy.

“She still recovered to some degree, weaker than before but still came home. But this time she has so many medical issues with her and I can’t bring her home.

“She is bedridden, in constant pain, suffers from severe migraines, total weakness, is unable to walk, sensitive to lights and sounds, celiac, brain fog, unable to eat or drink and even unable to care for herself. We know there will be more, that’s expected.”

Ella’s battle kept her out of school for the past three years. Joanne believes her daughter has a rare disease that has yet to be identified in her body.

The hopeful mum is now trying to raise £25,000 to help fund life-saving treatment for Ella. It would also help make their home more suitable to his needs.

Joanne said: “The future looks very uncertain right now, but I know I can’t do it alone. We need to find experts on rare diseases and gut failure.

Joanna McKee and her daughter Ella

“She has just turned 17 and her age makes everything very difficult in the NHS. She is currently on a children’s ward, but in the future she is too old for pediatrics and too young for adult wards.

“We have found an expert in intestinal failure, but he has a private practice in London and would therefore have to pay for consultations. Additionally, the ground floor of the house will need to be modified to take on his new non-mobile condition. We we struggled so much before that.

“We need sterile areas, an extension for the downstairs bathroom, a change from dining room to bedroom, equipment, rewiring and additional power outlets, etc. ., so many things are on the list. But the most important and first on the list is getting a diagnosis and seeing experts who can treat all of your conditions.”

For Ella’s birthday, Joanne put out a call for the community to send her birthday cards. The “fantastic” response led to 1,297 cards being sent to the hospital. Now Joanne hopes she can be home for future celebrations with the family.

She said: “Please help us keep fighting for the answers, to make the changes and to cover the cost of whatever is needed along the way so that I can hopefully- le, bring my beautiful daughter home before Christmas. We are mighty warriors, but even they need a helping hand from time to time.”

To help Ella and donate to her Go Fund Me page, click here.

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