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Adrianne Runs On A Mission for her son Eli

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IMG_0704          Something is wrong” they said, “His femurs are too short and curved,” they said; “it’s likely fatal” they said, “maybe you should consider terminating the pregnancy,” they said! Following our routine 20-week ultrasound doctors noticed that the baby, our 3rd child, was not measuring the right number of weeks based on bone length and they noticed the long bones were bowed or curved. 4 months, a zillion appointments and a rollercoaster of emotions later little Eli was born! My husband and I knew we may not be bringing a baby home from the hospital IMG_0702but if that were to be so it would be God’s will, not a choice of ours by terminating the pregnancy…
The first few months were rocky; Eli was born with multiple fractures in all stages of healing throughout his body. One major fracture was mid femur bone which made his leg lay up on his chest for a week after he was born. During this time, he lived on a pillow or pad because holding him just broke him more. Eli underwent genetic testing and was eventually diagnosed with Osteogenesis Imperfecta. We thought exactly what you just did…what the heck is that!? Never heard of it. Much to our surprise, our healthy family just took a left turn with a condition we had never heard of and knew zero about. Osteogenesis Imperfecta, O.I. for short & aka Brittle Bone Disease, is a genetic disorder. We were shocked…a genetic disorder? Doesn’t that mean it gets passed down through genes? We have no family history of O.I. Even more to our surprise there is such a thing as a spontaneous mutation of a gene, and that is exactly what happened with Eli. Our bodies are made of 25-35% collagen. Collagen is predominately in connective tissue and bone. Basically, someone with O.I. has a gene that got a mind of it’s own and now either makes collagen incorrectly or in some cases doesn’t make enough. It is most noticeable in the bones, where the defect causes fractures (breaks), deformation, and short stature among many other not fair things! Watching our child suffer break after nasty break is so hard. O.I. is a form of dwIMG_0701arfism so he is short in stature with low muscle tone and loose ligaments and joints. But guess what? He is cute, awesome and here to say the least!
20 years ago there was not any treatment for O.I. By bringing awareness to the condition, clinical trials and orthopedic interventions made great strides! Those darn doctors were wrong, he made it! He thrives! He gets hurt too but he has a fantastic upbeat personality and just plows through life even with the cards he was dealt! Eli receives an infusion treatment every 8 weeks that help his bones get stronger. He has had multiple orthopedic surgeries to place medal rods in both femurs and one humerus to correct break deformations, straighten the bone and add strength by acting as an internal splint. Life is a bit harder for Eli and it is dScreenshot 2016-06-09 at 10.26.46 PMefinitely different for our family. Finding out that we were not alone in this disease and there were families dotted all over the map fighting the same challenges we were we has given us great strength. We have felt such a strength in numbers! We have made close friends that we have never met, just by being there for each other and understanding what we are going through together. Our mission is to raise awareness for O.I. To normalize disabilities and to prove to the world anything is possible with love, faith and hope. Walkers, wheelchairs, casts & scars say nothing more than “I am strong”. Eli is extremely intelligent and witty with a personality quadruple his size! We want the world not to be afraid to get to know him and all of his O.I. buddies. We do not want pity for Eli, we firmly believe he is a gift that we were lucky enough to receive. We believe he is here to inspire and create positive change. We believe we, and now you, are truly blessed by knowing him! May we all conquer life with such bravery and may we all shine with our unbreakable spirit!

Adrianne Melendez
Adrianne is the mom of Eli Melendez. Sweet Eli was born with Osteogenesis imperfecta. You can follow Eli and his story on facebook @elibrittlebones. You can also join Adrianne in the fight against Osteogenesis Imperfecta by joining the O.I.Can Virtual Race and registering at RunOnAMission.com.

One thought on “Adrianne Runs On A Mission for her son Eli

  1. Dave and Rosann Tasset

    This community is so thankful that Juan an Adrianne did NOT decide to terminate the pregnancy with Eli. He is an adorable, cute little squirt who has more enthusiasm than you can stand to watch. He just wants to be like his brothers and do everything they do…..and despite his shortcomings he WILL NOT HAVE ANYTHING TO DO WITH BEING HELD BACK. I remember them bringing him to the basketball games on a pillow…..WOW! Through their persistence and God’s grace and his determination, this little guy has come a LONG WAY!!!! Love you guys!!! Blessings!!!

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