A “warrior” teenager has been struck down with a chronic disease which has sent her life on a “downward spiral”.
Ella McKee, 17, who is from Tingley, was first diagnosed with severe myalgic encephalomyelitis (ME) and chronic fatigue syndrome at age 11. After this diagnosis the former “fit and healthy girl”, now spends much of her time bedridden in Leeds General Infirmary and her body has “shut down”, her mum said.
Ella’s mum, Joanne McKee, added that her daughter’s bladder “shut down” in 2019, and she was also diagnosed with postural tachycardia syndrome (PoTS) in 2021 – an abnormal increase in heart rate when sitting up or standing. Additionally she has been struck down with a number of urine infections, and is now fully dependent on being fed via a tube.
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Joanne said: “My beautiful daughter Ella was a fit and healthy girl. She loved sports and gymnastics and would always be on the go and full of energy.
“She has always recovered to a degree, weaker than before but always came home again. But this time she has so many things medically wrong with her and I can’t take her home.
“She is bedridden, in constant pain, has severe migraines, total weakness, unable to walk, sensitive to lights and sounds, coeliac, brain fog, unable to eat or drink and even unable to do basic care for herself. We know there will be more, it’s expected.
“This has devastated us. She has been poorly now for seven years. We thought she was poorly before this admission but now, everything has changed and very unlikely to get better.”
Ella’s battle has left her missing out on school for the last three years.
Joanne, who says she spends 11 hours a day, seven days a week at the hospital, added: “She still managed to get 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 on a regular basis instead of the pain and the tears I see every day. I can’t let her story end here, somebody, somewhere can find a beautiful ending for us.”
Joanne believes her daughter has a rare condition which is yet to be identified in her body. The hopeful mum is now trying to raise £25,000 to help fund vital treatments for Ella and help make her home more suitable to her needs.
“The future feels very uncertain right now but I know I can’t do it alone. We need to find experts on rare conditions and intestinal failure. She has just turned 17 and her age makes everything very difficult in the NHS, she is on a children’s ward at the moment but going forward she is too old for pediatrics and too young for adult services.
“We have found an expert on intestinal failure but he has a private practice in London so would need to pay for consultations. Plus the downstairs of the house will need to be altered to take her new non mobile condition. We struggled so much before this .
“We need sterile areas, an extension for downstairs wet room, change dining room into bedroom, equipment, rewiring and extra plug sockets etc, so many things are on the list but the most important and first on the list is getting a diagnosis and seeing experts that can deal with all her conditions.”
For Ella’s birthday Joanne held an appeal to get the community to send her birthday cards. The “fantastic” response led to 1297 cards being sent to her in the hospital.
Now Joanne hopes she can be home for future celebrations with the family. “Please help us to carry on fighting for answers, make the changes and meet the cost of everything needed along the way so I can hopefully bring my beautiful girl home before Christmas. We are strong 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.