Waylon Dean’s OI medical expenses


Waylon Steiner - Osteogenesis Imperfecta  

This go fund me is to raise money to help this amazing family with the financial part of their journey to help their sweet little boy! Such a rare condition will involve A LOT of medical bills and travel expenses to the top specialists in Omaha. They are some of the best people I know and they deserve our support and love. Anything you can spare will help! Thank you all for the donations and well wishes for Waylon Dean and his family ❤️
The following is written by Waylon’s parents explaining their story:

We've known from Day 1 that something was not "right" with Waylon. For the first year of his life, if Waylon was awake, and not breastfeeding, he was crying. When he was 3 days old, we questioned his Pediatrician on why the whites of his eyes, were not white. Her response was "It's probably nothing. It could be a sign of something pretty serious, but that's very rare. We'll circle back when he's older" (ps.. that "rare" disease that there's no way he could have... was OI.) When he was 8 months old, he fell and hit his head, and the bruise did not go away for 4 months. We now know, it was most likely a skull fracture. When he was 12 months old, we took him in for X-rays of his hips because he would drag one of his legs when he crawled as if it didn't work. He then was misdiagnosed with Hip Dysplasia because they noticed one of his bones in his hips was not developing at the correct pace. Then, we took him to a specialist for the Hip Dysplasia that told us he did not have Hip Dysplasia. However, on the x-ray she saw a crack in his vertebrate. She then misdiagnosed him with Spina Bifida Occulta. The crack is no longer there, which tells us that at the time we were taking him to multiple doctors, at multiple hospitals, he had a fractured vertebrate, and nobody caught it. Fast Forward to this past October. While Waylon was standing in the middle of the walkway, I stepped around him. As he took off running, he ran into my leg. This fractured his Tibia. He was then put in a walking boot for 4 weeks. 2 days after the boot came off, Waylon rolled out of bed and fractured his collar bone. The collar bone did not break in the typical spot, but instead, split down the end. The day after he was cleared to be out of his sling, he was running through the house and slipped on some Go Fish Cards. When he slipped, he ran into our couch, and it snapped his Tibia completely in half. He was put under, and had his tibia set that night in the ER. He was casted from his toes to the top of his thigh for 5 weeks. After the 5 weeks, he was put into another walking boot. 2 days after that, while laying down for a nap at school, a child fell on his toes. This fall, on his toes, fractured his Tibia again, but in a different spot. That night, he was put back into a full leg cast. Finally, at one of his weekly checkups for his broken Tibia, Waylon was diagnosed with Osteogenesis Imperfecta. OI, also known as Brittle Bone Disease is a complicated, variable and rare disorder that effects 1 in 20,000 people. Its major feature is a fragile skeleton, but many other body systems are also affected. OI is caused by a mutation in a gene that affects bone formation, bone strength and the structure of other tissues. Unfortunately, It is a life-long disorder and has no cure. Waylon will have a team of Specialists out of Omaha, Nebraska at the top OI Clinic in the country. A Geneticist, Orthopedic Surgeon, a Dental Group, a Physical Therapist and Occupational Therapist, a Nutritionist, and a Social Worker. He'll be starting Biophosphonate Infusions in hopes of strengthening his bones. These infusions will be 4 hour sessions, every 3 months, until he is done growing. This has been, and will continue to be a very hard journey for Waylon and our family. Aside from the obvious, raising awareness for this rare disease, our goal is to encourage you to ALWAYS fight for your kids. If you feel like something is wrong, do not give up when a Doctor blows you off. We saw SEVEN Orthopedic Surgeons before we got this diagnosis. I've lost track of the number of Pediatricians we've seen. Do not let people make you feel like you're making a big deal out of nothing. If you know in your heart that it's a big deal, it's a big deal. And NEVER let people make you feel bad for the love and comfort you give your child. You're not spoiling them. You can't hold them too much. They do not need to cry it out. If they need you, they need you.
  • Carolyn Vinup 
    • $100 (Offline)
    • 26 mos
  • Joanne Goggin 
    • $25 (Offline)
    • 27 mos
  • Christa Wraga 
    • $25 (Offline)
    • 27 mos
  • Judith Koch 
    • $50 (Offline)
    • 27 mos
  • Rosemary Engelbach  
    • $100 (Offline)
    • 27 mos
See all

Organizer

Cristina Chestnutt 
Organizer
Duvall, WA

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