Lexi's CRMO Awareness – Bravelets

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Lexi's CRMO Awareness

Posted on April 04 2016

Lexi's CRMO Awareness
It all started with a bump on her leg that would not go away when Lexi was 4 years old, We took Lexi to the Dr. and ask him about this bump, because she had it for like 6 months and it still wasn't going away and the Dr. said it's ok it will go away, it just takes time. Then about a month or so after that the pain started for Lexi, She kept complaining of pain in her ankle and we couldn't figure out why cause she didn't sprain it or anything, the pain got so bad she was limping and kept crying and crying. We took her to the 2 different hospitals in our area, two different times each and they could not figure out what was going on with Lexi. The pain got so bad she could not sleep at night and she would wake up crying profusely. The poor child kept saying Mommy what is wrong with me. what did I do to deserve this much pain, what did I do. It was so dramatizing to see her in that much pain, So we decided to take her to Hershey Children's Medical Center in Hershey, PA. and after about two days of testing they found the CRMO (Chronic recurrent multifocal osteomyelitis) AKA Bacteria had attached itself to the ankle bone and they had to do surgery to remove it before it ate into the bone marrow and become septic. By now Lexi was about 5 1/2 years old. Lexi has had many different treatments and nothing seems to make it go away for ever, her inflammation counts go up and down with treatment but never stay down. Which means it attacks other areas of her body, it had attacked her knee, hip, shoulder, since the ankle surgery and they keep trying different thing to kill this bacteria, but nothing has helped to make it go away forever. This illness is so rare that only 1 in a Million get it and it more prone to girls then boys. 5 out of 6 children that have it will be girls. Lexi is now 10 years old and still has to deal with pain everyday. So please if you can find it in your heart to help with this cause we would appreciate anything you can do to help. May God Bless You and may you never have to experience the pain that Lexi lives with everyday.
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  • Anonymous: March 27, 2018

    I am 12 years old and I also have crmo,I’ve been battling it for 5 years and I go for remicade infusions every month.

  • Caren Rothberg: November 06, 2017

    Hi there. My daughters CRMO was FINALLY discovered after years and years of saying her knee pain was growing pains. It’s been quite a struggle. We are about to do her 2ndbone biopsy hopefully ASAP because Alexa, my 10 yr old daughter has been in awful pain everyday for over a week. She does have daily pain but this is the worst it’s been. It was nice to read your story and know we are not alone. Being a single mom who does everything all by herself it’s been terrible. Her dad tells her to be stronger and not to think about the pain, when he does see her once a month. It’s so hard, and I️ hate that I️ cannot make her pain go away. Thank you again for your story. ???