Girl fights CRMO

We’ve reached 12 weeks of injections w/ this crazy disease, & still experiencing several days of uncomfortable pain and swelling...
no remission yet, but we’re not losing hope.
While she does have days of less pain, she now has added flareups in the fibula & tops of her feet.
We are waiting on the results of a recent MRI of her Right foot. The doctors suspect another lesion, as the bottom of her foot swells to the point of limping & pain while walking & skating.
While her disposition is not always her normal self, she still manages to stay busy & tries to keep involved in physical activities & play.
Meloxicam is helping w/ inflammation along w/ Iron, vitamin D, folic, tummy meds, a form of chemo injection & an occasional Tylenol for extra pain.
We are grateful for her close friends Lily, Mia, & Gracie along w/ gamma, papa and cousins who cheer her up & get her through the rougher days!
Thanks again for the continued prayers, support, shares and overall love during what looks like -could be a very long illumination process of multiple meds, doctors and a Journey we could never do alone
@crmoawareness.org

After several months & some trial
& error, we've finally started a treatment plan- 2 weeks down already!! ;)
After several trips to U of M, they have decided to start Alyea on a form of chemo medication that will hopefully send her into a remission state over time. Injections, along with an arthritis medication will be treatment for the next few years.
We are grateful to get started with a treatment plan, but only time will tell if this is the right treatment for her. Many times a child with CRMO will go through several medications before finding the right solution.
Alyea is still experiencing some discomfort, but pain travels from her mandible area to other areas often, giving her jaw some well needed rest at times. Recently she has had some flare ups in her feet as well as the fibula bone. Another iron infusion was completed and we will have an additional MRI done on the lower legs next month.
We continue to take one day at a time, & she is grateful that she can continue to enjoy her favorite sport of skating, w/ only a few set backs on days where her feet are too sore.
Thank you to all our prayer warriors for your continued support!
Love always- The Rourke’s
crmoawareness.org

So many have asked....What exactly is CRMO?... So many question of what happens when a child suffers w/ this disease-
CRMO stands for Chronic Recurrent Multifocal Osteomyelitis.
1 out of a Million children suffer from the disease throughout the world, and 1 out of approximately 500,000 suffer with it throughout the United States.
Doctors are just now becoming educated about this rare disease & so many have never heard of it, leaving many misdiagnosed for years.
CRMO is when the immune system wrongly attacks normal bone.
It deforms & inflames the bone & causes the bones to develop lesions.
It's a rare Chronic & painful disease that attacks any of the long bones of the body, as well as facial bones.
The extreme inflammation expands the bone causing discomfort along w/ debilitative side effects. Many children develop a limp, aching pain to the point of having a difficult time using the area that is affected, and when it is found in the mandible bone, they will complain of radiating pain, as well as pressure pain throughout the side of the mandible and sometimes explain it as similar to an earache or glands swelling... also can develop discomfort inside the mouth along the jawline- causing individuals to have a hard time chewing or even opening their mouth at times.
This chronic disease is not always visible to the public eye, because many experience pain & swelling that can't always be seen.
CRMO, is a genetic disease that causes the immune system to wrongly attack the bones. Unfortunately a child can wake completely fine, and then w/ in hours, can develop a flare-up.
What starts out as an ache, may eventually develop into a full blown site of inflammation, pain & swelling.
It is a hit or miss diagnosis, answering the question to why one individual child can go through multiple bone biopsies, MRIs, CT scans, x-rays, therapy, and trial several medications before sending the disease into a remission state.
We pray that more and more doctors continue to find the education to help fight this rare disease & that those children suffering w/ it can find relief at a quicker rate.
My hope is that, after Reading this, you'll understand CRMO a little bit more & help in finding a cure to such a rare disease.
Blessings