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Little Red Ryker

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Little Red Ryker

Meet, Ryker. A firecracker of a redhead with with loads of personality.
Ryker is 3 years old and was born with a rare disease called Osteogenesis Imperfecta. Also known as Brittle Bone Disease. This bone disease affects the collagen in your genetic makeup, so no amout of milk/calcium will fix it.  Ryker also has a  rare severe recessive form of O.I. listed as Type 8. There are only 5 recorded type 8s in the USA. He was born with over 18 counted for in uterine fractures. During birth his neck and left tiba were fractured. Since then Ryker has broken over 40 bones, resulting in many physical set backs and progressive bowing.
Ryker can't sit up, roll over, walk, crawl or stand. O.i. has also affected his muscles, severely. He just gained head control around 18 months and could hold his own bottle around 19 months.
Ryker receives 5 therapies a week ($20 each)  to build endurance, strength and work on speech.  We travel anywhere from 45-100 miles a day for these appointments. Every 8 weeks, for 2 days Ryker receives an IV infusions of a bisphosphonate called Pamidronate. Bisphosphonates help strengthen the bone and reduce bone pain. These infusions make an 8 hour day at the hospital each.
In December of 2013 Ryker had FD rods placed in his femurs at Childrens Hospital of Omaha Nebraska. We travel 15hrs one way there for a yearly clinic of OI specialists and all surgeries. Before Ryker's femurs would break from practicing to sit. He never raised his legs because his bones couldn't hold them. Two months after bilateral femoral rodding, Ryker was touching his toes! Since September 2013, Ryker has fractured his humeri at least 20 times or every 2 weeks. They fracture from picking up his paci. Touching his face. Reaching for a toy. It doesn't take much.  September 10th 2014 we traveled back to Omaha, Ne for our yearly O.I. clinic and on September 16th 2014, Ryker had his left humerus and left tibia rodded. On December 1st, 2014 we traveled back to Omaha again for 6 days to have his right humerus and right tibia rodded.
As awesome as insurance is (haha we all know), there are many things they don't pay for. In flights and a rental car for 6 days we are looking at $2000. Fortunately we stay at the Carolyn Scott Rainbow House, which works off donations. It's  asked that each family donates at least $15 a night of stay. Thats another $100 for the trip. There is always food, gas and parking. Which is around another  $250 for the week. All in all, each one of these surgeries cost us anywhere from $2500 to $3500 out of pocket just in travel expences alone.  Insurance declined pretty much every piece of equipment ordered. Claiming  they are "convenience" items. When did a potty chair for a 3 year old become a convenience item? 
We With all this being said,  Ryker is still just like any 3 year old. Crazy and strong willed. This may be a long road he travels but he will never travel it alone.

You can also see Ryker at

WWW.FACEBOOK.COM/RYKERWYATTCURTIS

Thank you
Thera, Tommy and Ryker Curtis
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Donations 

  • Ann McErleane
    • $25 
    • 5 yrs
  • Penny, Bryan, Delaney, Dalton, Emmy & Maddox Jones
    • $40 (Offline)
    • 10 yrs
  • Valerie Rohrig
    • $25 (Offline)
    • 10 yrs
  • Christy Ferguson Lorenz
    • $25 (Offline)
    • 10 yrs
  • Cheryl & Darren Carter
    • $50 (Offline)
    • 10 yrs
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Organizer

Thera Brown
Organizer
Portland, TN

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