Makayla was your busy active 8 year old child who loved ballet, tap, horse riding, swimming, baton twirling and drama. Then one day she went out with her father. I kissed her good bye said see you later but never imagined what happened.
She came home saying she had a headache, sore throat, feeling sick, was burning up but cold and shaking. We went to the drs who said infection and treated it but that didn’t work. We went back again. Another round of antibiotics, again nothing so we went back and was then told a virus. This went on for months and in the mean time she could only manage a few hours at school a week. She would even sleep for 22 hours.
When it didn’t improve we went back and were sent to hospital where she was diagnosed with M.E . The worst thing was there is no treatment and so many medics say different things. We were told school full time push her then others said nope cut it back to a few hours a day only. Pushing her made her worse so we cut back.
Due to her illness she had to give up her hobbies and she could only manage 3 hours at school a day. Her condition left her extremely tired, in pain, light sensitivity, touch sensitivity along with other symptoms. She slowly learnt to pace herself. However sometimes she still suffers with payback from doing things but she tries to do what she can and at times says the payback is worth it.
She lost her friends and it broke her heart when she had to give up the things she loved the most but we did keep her horse - she needed a reason to get out of bed even if it was to just sit with him. She needed a friend to talk to. Sometimes she was in too much pain to ride, other times she could but paid for it when she got home. She had lost so much we couldn’t take this away from her.
She was asked to trial a Norwegian Telepresence robot that sat on her desk at school and she could work from home. This robot was amazing. She no longer struggled or had to play catch up and this was reflected in her English grade as that’s what he was used for and her confidence grew.
The hospital Worked with us to get her school hours up and worked with her to be able to spend time with her beloved horse.
She was then diagnosed with POTs and once we got the medication right she came on in leaps and bounds. Her school hours started to improve, so did her grades and so did her M.E. Sadly she couldn’t sit her exams due to COVID and after missing nearly 8 yrs off school she had worked so hard to get her grades up.
Sadly she had to re sit her maths but this time she had an amazing supportive setting and she managed to get a grade 5 in maths and a distinction in her college course.
We still have days where she’s not so good or if we want to do something we have to say ok you can’t do this but this works and it means she can then do stuff maybe a little differently but it’s our way.