Mission Statement:

The goal of “JakeSake” is to raise awareness about OPD syndrome and provide our friends and family with updates and pictures of Jake’s progress and accomplishments.

Jake’s Story

Jake was born on October 18, 2004 with an extraordinarily rare syndrome called Otopalatodigital Type II (OPD). There is no genetic evidence of this syndrome in Jake’s family’s history; it is determined to be a spontaneous gene mutation. He was born with club feet, dislocated knees, dislocated hips, dislocated elbows, limited range of motion in his arms, shortness of the bones in his arms and legs, webbing of fingers 3 and 4 in both hands, webbing of toes 2 and 3 in both feet, slight cleft in the soft palate, severe tracheal malaysia (which means, his wind pipe is not fully developed, it is floppy and closes down which compromises his ability to breath), the base of his skull is fused to the first vertebra, and he has some scoliosis. Jake does not appear to have any neurological concerns as he continues to meet his milestones.

Despite all Jake’s physical challenges he has the most amazing disposition. He has a permanent smile; he laughs with ease and is undeniably adorable. You will always see Jake with gel in his hair, and a twinkle in his soulful eyes.

Jake has such a brave heart, it just keeps beating, making us all rise above, push our limits and want to get the most out of life. We are honored to be his parents!

What is OPD?
There have been approximately 30 cases reported world wide. Otopalatodigital is defined as an X linked semi dominant condition characterized by deformities in hearing, palate, and the skeleton. The few children afflicted with OPD usually don’t live beyond 5-6 months due to respiratory failure.