We are very fortunate. Lucky even. We often say that we have so much to be thankful for because we have a very healthy sick child. Elia appears to be like every other 2-year-old. She loves to sing, dance, run, blow bubbles, and her favorite color changes with the time of day. When people meet her they often comment on her outgoing and funny personality. In her mind, every song deserves a boogie (or two), every flower deserves a ‘niff, and every outfit needs proper accessories. Her, and her little brother Zavier, add so much happiness to our days.
And somehow, at just 2-years-old, she manages to be all these things while fighting a battle that we can’t relate to or understand. Elia was diagnosed on May 22, 2013 at 22 months with Juvenile Dermatomyositis (JDM). It’s an extremely rare autoimmune disease that affects about three in every one million children per year. How rare is that?
Imagine if 15 professional football stadiums were filled to capacity and three lucky fans were picked at random out of everyone in attendance to win a big prize. Terrible odds, right? Might as well head to the concessions and forget the whole thing. Totally agree. Except, we did “win.” Our name was called and we didn’t want the prize. Want to hear what we won?
Since there’s no cure YET, we won a lifetime supply of:
- A super immune system that doesn’t know when to stop fighting and turns on itself attacking her skin, muscles, and potentially every other system in her body.
- Dangerous sun sensitivity, which requires constant use of sunscreen, hats, and protective clothing.
- Medications that are harsh, unpredictable, and cause other side affects that go beyond the disease itself.
- IVs, infusions, blood work, MRIs, strength tests, swallow tests, school and work absences, hospital stays, and fear and isolation during cold and flu season.
Some prize, huh?
Fortunately, Elia is doing great. She’s responding well to the medication and her doctors believe that she is well on her way to remission. We’re steadily decreasing her dosages and her infusions have decreased from once a week to once a month. If all continues in a positive manner we’re hoping that her treatment will be a total of two years from diagnosis. In the grand scheme of things that’s pretty fantastic. We know how lucky we would be if that really was the outcome. Most JDM patients are in treatment for a minimum of 4-6 years. And sadly some will always be undergoing treatment.
The thought of eliminating the medications and treatments, mood swings, changes in appetite, and energy fluctuations is the light at the end of a very long and winding tunnel. We’re hoping she enters remission and all of these things will become a distant memory for her, and that because of her age, she’ll only “sorta” remember.
Even though our best-case scenario will be a much different life than we have right now we’ll still be fighting the fight to keep her from having a flare and returning to an active stage of the disease. For her to remain in remission we’ll need to avoid her triggers which are thought to be sun exposure, viruses, and stress. In theory, if we can minimize the triggers we minimize her risk. Easy enough, right? I mean, what are the chances of her being exposed to the sun, germs, or stress?
So, even in remission, we will:
- Apply sunscreen throughout the day (every day)–even when we’re inside.
- Avoid the peak sun times and monitor the UV Index on a daily and even hourly basis.
- Wear hats and protective clothing if we have to be out during high-risk times.
- Do our best to avoid germs by washing our hands, sanitizing surfaces, and avoiding contact with those who may be contagious.
- Learn to manage stress in a healthy way. Yes, even at two years old. And yes, this is a work in progress.
Believe me, we understand how wonderful it would be for her to be in remission. And, trust me when I say we won’t take it for granted, not even for a second. But, we’ll admit we’re still sad for her. When we think back to our childhood we remember long days at the park, swimming, and playing sports like softball, tennis and soccer. While these things are not impossible they will have to be much more calculated and will lack the innocent spontaneity that should accompany childhood memories. Even the well planned family vacations will now be scheduled according to risk rather than typical school and work schedules.
There are so many things that we now have to consider that never crossed our minds just months ago. It’s amazing how life changes in the blink of an eye. For instance, our next home will be selected based on the available shade in the yard, the placement of the windows in her bedroom and throughout the house, and will be one level in the event she experiences muscle weakness or deterioration. When she starts school we’ll need to make sure her desk isn’t too close to the windows in her classroom, that she and her teacher understand the importance of proper sunscreen application, and that we’re made aware of any viruses affecting the students.
As for now, we’re sad for the day when the neighborhood children ask if she wants to come out and play and we have to calculate the risk, take precaution, monitor the clock and bring her back in before she’s ready. We know this day is coming because we spend at least a day or two a week consoling her as she peeks out the window watching the other kids play. It breaks our hearts and we don’t even know how to begin to explain it to her.
So, even though she “looks” healthy and she’s heading in the right direction we’re not stopping until there’s a CURE.
Until there’s a CURE, we’ll be raising awareness by sharing our story.
Until there’s a CURE, we’ll be raising funds, one dollar at a time, until the research can be done.
Until there’s a CURE, we’ll move mountains to help Elia reclaim her childhood and make sure no other child is diagnosed with JDM.
Until there’s a CURE, we’ll be here—we’re not going anywhere. Join us, will you?
Here’s how you can help:
CureJM is in a contest with 700 charities to raise the most money by January 9th. We’re currently in 1st place, but quickly losing our large margin. If we win we’ll get another $100,000 to add to what we’ve already collected. Winning this money would allow CureJM to fund critical research and get closer to a CURE! Can you help by making a donation? Every dollar helps, can you spare a few?
Celebrate 2014 WITH us!
Due to Elia’s treatment schedule we celebrated New Year’s at Noon at the infusion center at Children’s Mercy Hospital. Fox4 News-Kansas City joined us and several local JM families for the celebration. If you missed it you can watch it in its entirety HERE. We hope you’ll watch and learn more about our cause and help us say so long to 2013 and welcome the NEW year!
We appreciate all of your support and encouragement during this whole experience.