Leora is five years old, and is quite a character! She loves to dance, ride her bike, and build legos.
In November 2019, she started having a mysterious pain in her ankle. It had just snowed beforehand, and we thought maybe she had twisted it. But the pain continued, so we got xrays. Unfortunately, nothing was visible, so the doctors couldn't recommend anything.
A few months later the pain came back, much worse, and this time in her hip too, but we were also in the middle of a lockdown, unable to go see a doctor in person. Leora has had lots of previous medical trauma (procedures involving being pinned down to keep her still) and she is terrified of doctors, and wouldn't show her limp during the phone consultation. The doctor prescribed some ibuprofen, which helped for a few days, but then it stopped working.
She soon was unable to reach to pick something up off the floor. She couldn't ride her bike for more than a few minutes. She couldn't walk the block to the playground, let alone play there. She stopped being able to participate in her Zoom dance classes. The doctors had no answers for us, so we sought an alternative doctor.
The person we found ran bloodwork to test for food sensitivities and autoimmunity, since that runs in our family. We soon found she is severely sensitive to wheat and grains, and through a food elimination diet, we have found she is sensitive to most things.
After eliminating inflammatory foods, she began to improve, but when it came time for her well-check with her pediatrician, they finally became concerned with her still being in pain months later, and referred us to a pediatric rheumatologist.
The wait was long to be able to see them, but luckily her pain seemed to be getting better during that time. They took more xrays and found severe damage within her ankles and wrists. This was very concerning, and they referred us to an orthopedic surgeon to get an MRI to see how extensive the damage was.
She was then diagnosed with Chronic Recurring Multifocal Osteomyelits - a rare auto-inflammatory disease which is characterized by pain and bone damage in multiple joints, coming and going for no known reason.
She has damage in her wrists, knees, pelvis, and ankles. However, she is very lucky it was not found in her spine or jaw.
This is such a rare disease that there is very little research on its cause, and there is no known cure. However, some children go into remission after a course of NSAIDs, which we are currently attempting. Leora had been in remission for a few weeks, however she is now in pain again. We never know how long she will be in pain for, or what might make it worse.
The main concern with this, is that she is still growing, and the damage is occurring along the growth plates, which can lead to deformation of the bone as the disease progresses. We are hoping that her course of NSAIDs and food elimination will keep this from happening, but we will need to continue monitoring her troublesome spots to see. Unfortunately, lack of pain does not indicate lack of damage perpetuating.
This GoFundMe will cover the numerous medical bills we have accumulated over the past several months to figure out what has been going on for her. We have not been fortunate enough to have had any of this covered by insurance.
Thank you in advance for anything you are willing to contribute. Leora will be grateful to know so many people care about her well-being and recovery, and hopefully soon she will be able to play hard like a typical 5 year old can.
- D Madrid
- Thomas Fuller
- Matthew Mansell
- Margaret Gellatly
- Lindsey Batchelder
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