In May 2023 our daughter suddenly was unable to move as a normal 4 year old, myself and my husband found ourselves having to care for her like a baby again. She couldn't sit up, lift her neck, wrap her legs around us for a piggy back and one day after school I found myself carrying her in my arms to the car as she just couldn't make the short walk.

Along with this came a rash on her face, her skin looked burnt down one side, a rash which previously had come and gone on a much smaller scale and we were trying to make sense of it for quite some time.

Friday 2nd June 2023 our daughter was diagnosed with Juvenile Dermatomyositis (JDM) during an outpatient appointment, which then lead to a 2 week stay at the Evelina.

An MRI showed her muscles were so inflamed which was causing the sever weakness, she would constantly fall over, so as she couldn't hold her neck, meant she would just fall to the ground without the ability to stop herself to protect her head.

Long story short, then the Evelina rheumatology dream team came to the rescue.

Our Daughter had her organs checked and monitored, medication plan put into place and 2 physiotherapy sessions were given each day. She also had an ENT specialist to check her swallowing as eating had started to become a problem as well.

On admission to the Evelina her muscle score was 8/53 and today with continued daily physio and hard core medication which tastes awful, i dont know how she does it, she now scores 46/53.

For now things are under control thanks to the team at the Evelina. The care they have provided our family has been a god send, it has been an absolute whirlwind since June. Adapting to this autoimmune disease, trying to let our 5 year old be a child whilst also having to keep her healthy and safe. It's a mindfield both emotionally and physically and we certainly couldn't get through it without the physios, doctors, nurses, psychologists and play specialists.

So as a way of a little thank you, I will be running th Great South West Half in May to raise money for the team that has given our little girl and so many other families so much help.

You really will be donating to a truly worthy cause.