Lucy's Story
Lucy had just turned 10 when she noticed a rash on her legs – the same rash you’d get with meningitis.
Worried, mum Kate took her to A&E. She was diagnosed with Henoch-Schönlein purpura (HSP), an autoimmune disease.
Kate says, “Doctors said most children get better after a few days. But the next day, Lucy became very sick and couldn’t keep food down at all. The rash spread everywhere, so we took her back to hospital.
“She ended up staying in for three weeks because she couldn’t keep any food or water down and was losing a lot of weight. She was put on a drip and given steroids. It took her a long time to recover. The disease had affected her guts, kidneys, and joints.
“The hospital stay was difficult for us. It was a horrible time. Lucy was very distressed during treatments and had to have drips and a tube in her nose.
“What made the stay bearable were the daily activities provided by ECHC; every day someone came in to do something special. Once Lucy was no longer in isolation, she took part in most activities.
“There were all sorts of things to cheer her up. Storytellers, movie nights, and visits from football teams and rugby players who were so kind and supportive with her. Lucy was especially excited to see The Hearts, who all gathered around her for a picture and left her with lots of gifts.
“We also visited the Hub to see therapy dogs, which was a comfort for Lucy since she missed her cats at home. The dogs were calm and sweet, which helped ease her stress.
What made the stay bearable were the daily activities provided by ECHC; every day someone came in to do something special.
Kate, Lucy's mum
“It’s hard for an 11-year-old to have a rare autoimmune disease that she can’t easily talk to her friends about. And she needs to keep coming back to hospital for regular monitoring of her kidneys. But she hasn’t let it stop her at all. We’re so very proud of how she’s challenged herself and come straight back.”
Kate has now been inspired to run the Edinburgh Marathon and is raising funds for ECHC to give back for all the things that made Lucy’s hospital stay a more positive time.
A big round of applause for our superheroes, Kate and Lucy!
