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. These details are just scratching the surface.

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 recently finished 9 rounds of monthly 2 day long infusions - a big relief as this was gruelling and time consuming.  She is on daily meds, including steroids, and has two other drugs administered via 6 injections each month. Her muscles, strength and stamina have improved considerably but her skin still shows the disease is very much active and many signs and symptoms are still present as we try to wean her from steroids.  We hope that we can get Eliza into remission but we have absolutely no idea how many years this will take or if we will ever get there! JDM is monocylic (one occurrence in a lifetime), polycylic (more than one occurrence in a lifetime) or chronic. We have no idea where Eliza is in this and that is hard to bear. 

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 am choosing to run one running event per month for the year of 2019 in a bid to raise money for ReMission (who will ring fence the donations from this page for JDM). I have very sporadic running training and so I have typically stuck to 10k-10mile events. I also choose races that challenge me in terrain or are slightly different or novel (in the sand, in the dark, 80% hilly!). Thinking of Eliza and what a bad-ass she is really inspires me and keeps me going. I hang all of my medals up on her curtain pole and she is the very proud owner of them!

January - Dark Moors 5 - COMPLETED

February - Longleat 10k (registered) - cancelled due to bad weather. Now signed up for Race At Your Pace - goal to run 25 miles in February - COMPLETED

March - Larmer Tree 8 mile dark run COMPLETED

April - Jurassic Trail 10k COMPLETED and by far my favourite event as yet

May - Houghton 11k COMPLETED

June - 50 mile Race At Your Pace COMPLETED 

July - Abbots Ann 10k, Race The Tide, Bournemouth 10k, 25 mile Race At Your Pace COMPLETED

August - Bath Two Tunnels 10k COMPLETED

September - Crafty Fox half marathon - COMPLETED (very untrained for this) - ended up being 14.6 miles of rural Dorset countryside - i.e. hilly hilly and extra miles for my money!

October - 2nd leg of the Clarendon relay, 6.5 miles COMPLETED

November - New Forest Trail 10k , Maverick Dark Hampshire 10km COMPLETED

December - Maverick Dark Dorset 15km COMPLETED

If you'd like to know more about Eliza's disease, please take the time to watch this video which gives great insight: http://curejm.org/fsn/video_for_the_newly_diagnosed.php