Condition: Rare Genetic Disorder - Oto-Palato-Digital Syndrome
City, State: OR
Club: Byrom Elementary School Sparrow Club Service Hours: 593
Date Adopted: 4/14/2008
Jake's Story:Jake is one of the greatest four year olds you will ever meet! He is a champion at overcoming challenges and will definitely inspire you to do the same. He was born with an extraordinarily rare genetic syndrome called Otopalatodigital Type II (OPD). There have been approximately 40 children worldwide diagnosed with this syndrome. Jake was born with his elbows, hips, knees, and feet severely dislocated. He also has short bones in his arms and legs, webbing of several fingers and toes, a cleft in his soft palate, and severe tracheal malaysia (his wind pipe isn't fully developed - so it makes it harder to breathe). Jake has had 11 surgeries to date and has been hospitalized countless times for respiratory problems. He seeks medical treatment in Portland, at Emanuel hospital, where he has loved his nurses. He is also a patient at Seattle Children's Hospital where he is being seen by plastic surgeons for craniofacial concerns. Most recently, Jake has traveled to Sinai Hospital in Baltimore MD, for a very specialized surgery on his hip, knee and ankle. He has many more surgeries ahead of him and all with the hope that he will walk for the first time. Despite all that, Jake continues to inspire all who know him. He is always smiling, loves to laugh, and play with his older sister Sidney. He loves to eat turkey, ride in his power jeep and play on the Wii! Byrom Elementary School in Tualatin is very excited to adopt him! This awesome family will use Sparrow Cash to help pay for leg braces, wheel chairs, hearing aids, medical expenses, and travel costs to Baltimore for future surgeries.