ELIZA & LAURA HUME'S STORY
Where: UK
When: 2019
What: 15 running events throughout the year, one or more per month, 186 miles in total
Over £2,800 raised
In July 2018 our little Eliza started presenting with an odd but subtle rash on her hands. Over the next few weeks the rash worsened, spreading to her elbows, knees, feet and face and nothing seemed to shift it. Worse still, we watched over the coming months as our bright, energetic and carefree girl slowly deteriorated into a child that could barely walk and didn't want to leave the house. Eliza only spoke if she had to, rarely smiled, needed help going to the toilet and cried every time I got her dressed, undressed or brushed her teeth or hair.
After much stress and worry, she was diagnosed in October 2018 with Juvenile Dermatomyositis - a rare autoimmune disease affecting around 3 in every 1,000,000 children. Eliza's immune system had been attacking her skin and her muscles (this includes organs), leaving her debilitated, in pain and utterly miserable. This disease is fatal without appropriate medical intervention, and any delays in diagnosis and aggressive treatment can cause permanent muscle damage and significantly impair a child's chance of remission. Eliza is now under the care of a fabulous rheumatology team at Southampton Hospital and is doing much better.
Eliza’s treatment started aggressively with intravenous steroids, followed by daily oral steroids and 9 rounds of monthly IVIG (2-day long infusions). She is also on daily meds and has two other drugs administered via 6 injections each month. Her muscles, strength and stamina have improved considerably but her skin still shows disease activity in the form of inflammation in her blood cells and blood vessels. It appeared that things were stable with slow progression but all was not as it seemed and Eliza recently returned to daily steroids and has had 7 further rounds of IVIG. We continue with IVIG and hope that this propels her forward. The goal is to get Eliza into medicated remission, showing no sign of disease activity for at least 2 years, before her regular medication is withdrawn.
It is not without its difficulties, but we are very proud of Eliza and how well she handles her health – with courage, determination and maturity. We focus on how far she has come and do our best to turn every negative into a positive. Eliza shows real compassion and empathy and would like to be a nurse when she is older.
Juvenile Dermatomyositis is a RARE disease. There is not enough information to understand how or why this happens, not enough research and not enough funds to research. We need to find a cure.
As I've heard many times - running is a privilege. I understand this now more than ever. Eliza LOVES to run and she's noticeably good at it. For a time running was out of the question for her, and when she started again, she would limp. I'm happy to say that her speedy little legs have returned and it's amazingly wonderful to see.
So, for Eliza, and because of my own love of running, I chose to run one running event per month for the year of 2019 in a bid to raise money for ReMission. I had very sporadic running training and so I stuck to distances of 10k-10miles. I also chose races that challenged me in terrain or were slightly novel (in the sand, in the dark, 80% hilly!). Thinking of Eliza and what a superstar she is really inspired me and pushed me when I was struggling. I hung all of my medals up on Eliza’s curtain pole and she is the very proud owner of them!
A huge thank you to all of you for your very kind and generous donations. I’m happy to say that I completed the challenge and, with your help, managed to raise more than £2,800 for ReMission towards JDM research. This is incredible and means so much to me. Thank you!
