Isla's Journey with JDM

Isla and Alice, Alice and Isla - there's hardly a time we mention one without the other, to the point where we mix up their names and sometimes just say "you"! These two girls have been inseparable since they were 6 weeks and 5 months old respectively, as have naturally built a bond unlike anything I've seen before. Isla has been an irreplaceable support for Alice through her complex health challenges, and now it's Alice's turn to be there for her "sister".

Isla's health began a very slow and then rapid decline over the past weeks, resulting in a 4 in a million diagnosis and 3 weeks (and counting) stay at SickKids with tests, treatment and many unknowns. Isla's mom Leslie put it best: "do the girls have to do EVERYTHING the same?!"

Below are details in Leslie's own words:

"Our lives were turned upside down about a month ago when we brought Isla into the emergency room at Sick Kids hospital. She had been complaining about having no energy and painful joints. We didn’t think much of it at first because it didn’t seem to be keeping her from living life and she tends to be a bit *ahem* dramatic. But when she refused to go trick-or-treating, we knew something was very wrong. By the time we got her to the hospital she needed to be lifted in and out of the car and had a hard time walking even a short distance.

Thanks to the amazing team at Sick Kids, Isla was quickly diagnosed with a condition called Juvenile Dermatomyositis, a rare disease where her body essentially attacks her muscles, among other things.

Right now we are having a difficult time getting this under control for Isla. On Friday afternoon we were admitted again for our 3rd hospital stay after bloodwork showed that her medication had not been working."

Isla has shown incredible bravery and strength no 6 year old should ever need. Her parents have been put through the rollercoaster of a complex health diagnosis - a nightmare I can't put into words. They have done so with patience, grace and an outpouring of support, but it is just so hard.

With Isla's diagnosis, the road to home is not linear. There are treatments, rehabilitation and trial and error which will have them in and out of hospital (mostly in for the time being), and incurring an onslaught of mental and financial burdens. Conversations around leaves from work, long-term stays and how to manage moving forward are becoming a reality, and the stress is mounting.

The good news is, JDM has a positive long-term prognosis when treated early and efficiently. Isla has the best team surrounding her at SickKids, and she is receiving world-class treatment from a specialist in this rare autoimmune disease.

I am setting up this page to help the Pizzanelli family during their time of extreme need. Having a sick child brings your life to a screeching halt, but in the background, life on "the outside" somehow carries on. From travel, to parking, to meals, supplies, medication and reduced income, it is time when finances are stretched - not to mention the upcoming holiday season, which we want to make extra special for Isla.

Thank you in advance for supporting Isla, Leslie and Gui as we do whatever we can to alleviate even one stressor during this time.