Team Colton is walking to raise awareness and funds for Dup15q

Click Here To Register for the 2018 Denver Believe Walk

Belmar Park - Denver, CO. September 16th 8:30 - 12:00

On September 16^th our family will be a part of the first ever Denver "Believe Walk" to raise awareness and funds for Dup 15q syndrome. Dup15q is a rare chromosomal abnormality that has impacted the lives of our very special twin boys.

Colton and Jack are identical twins who were born at thirty four weeks. Colton had intrauterine growth restriction which caused an early c-section delivery. Jack spent nineteen days in the NICU and headed home and Colton remained in the hospital. Colton was struggling with feedings and was very quiet with a weak cry. Shortly after Jack went home we started further testing on Colton to see if there were more significant problems. An initial MRI showed a small brain injury and a grade one bleed. We also did genetic testing and waited several weeks for the results. The genetic results later showed a Mosaic (not in all cells) duplication of the fifteenth chromosome.

After 93 days in the NICU Colton came home. Though Jack did not declare he needed any extra help we decided that we would test him for piece of mind. At eight months, Jack underwent genetic testing as well and sure enough his test results came back almost identical to Colton's. To say we were blown away by the results was an understatement. Jack continues to be a typical three-and-a-half-year-old and has never shown any symptoms of the abnormality. The specialists believe that because the boy's duplication is not in all of their cells Jacks brain cells were not affected.

This is not the case for Colton as the abnormality has shown itself in many ways. Colton has hypotonia, is fed via a feeding tube( because of aspiration risk), has sleep apnea, is nonmobile, nonverbal, and has chronic respiratory challenges. Seizures first began in Colton as infantile spasms at nine months and after an intense round of shots then turned into a different type of seizure, however; he has been seizure free for over two years and is currently off his seizure medicine.

Though there is a long list of what Colton struggles with or can't do there is so much that he can do. As his gross motor became stagnant we wanted to begin figuring out how to access what he was thinking and feeling. We no longer wanted to narrate Colton's life and wanted him to show us what he was capable of. Colton currently has been using an augmentative communication device to make choices and "talk" with his family and therapists. We are learning how to communicate with him in ways we never thought possible.

Colton is beyond loveable and his smile and eyes light up any room. He is our Colty-bear, tough as nails and sweet as pie. Jack is our wild, sweet, kind hearted boy who loves his family and lives life to the fullest. We are living a life that we never imagined we would live but have learned more than any do in a lifetime. In the end you need to be loved and give love in return and that is what our boys have taught us. Love is enough!

The Dup 15 alliance is an organization that provides resources and support for individuals and their families. Dup15q is an extremely rare abnormality with only 1,600 known patients. The alliance has established eight specialty clinics throughout the country where families can meet doctors who specialize in this duplication. We have yet to visit one of these clinics but know that one day we will make a trip happen. We also believe that our boys who are identical twins with this rare syndrome could give scientists and specialists valuable information and hope to help in any research we can in the future.

Please consider donating today!

- Click the donate button to contribute to the mission of the Dup15q Alliance

- Walk with us on Sunday, September 16^th at Belmar park in Denver, click "Register to Walk" link above to sign up

With love, Lindsey, Shaun, Colton, Jack, and Charlie