Team Declan is walking to raise awareness and funds for Dup15q

Click Here To Register for the 2018 Denver Believe Walk

Belmar Park - Denver, CO. Stay tuned for more details!

Family and Friends,

We, along with other Dup15q families, are participating in th Believe Walk in Denver on September 16th to raise awareness and funds for Dup15q Syndrome, a rare chromosome duplication syndrome that causes developmental disabilities, autism, seizure disorders, and numerous other challenges. Please take a moment to read our story, and join the fight to raise awareness of this rare condition.

After finding out we were pregnant with our first son, Charles and I were over the moon excited. We did all the 'first time parents' activities including baby showers, newborn classes, and setting up his nursery. Once Declan was born, our lives were forever changed. He was the center of our world and everything seemed perfect.

Fast forward 6 months, we started to notice Declan was not meeting milestones, and didn't really seem to connect with us. He started making these strange movements with his arms and head, which made us very concerned. During his doctor's appointment, he had a grand mal seizure.

We immediately took him to children's hospital and was admitted. After three days of testing, he was diagnosed with infantile spasms. This disorder caused our 7 month old baby to have uncontrollable passive seizures several times per day. We started him on injections to decrease, and hopefully resolve the seizure disorder. While in the hospital, we also sent off genetic testing.

Fast forward two months. During one of his many doctors appointments, we received the news that Declan has a genetic disorder, Dup15q, which most likely was causing the seizures. He has a duplicated 15th chromosome. Our hearts sunk. How do you accept the fact that your 9 month old child has a genetic disorder that he will never 'grow out of'?

Dup15q is exceptionally rare with only approximately 1,600 known patients in the world. The Dup15q Alliance provides family support and promotes awareness, research, and targeted treatments for Dup15q Syndrome. They have established eight specialty clinics throughout the country where families can meet with doctors specialized in this rare syndrome. The Dup15q Alliance is a small organization and donations of any size help empower them to continue their mission of assisting families and children to reach their maximal potential.

It took awhile to accept this diagnosis, but we put all of our energy into helping our son however we could. From the time he was 9 months old, he has been in physical, occupational, speech, and special education therapies. We do everything we can for our sweet boy, and he is such a ray of light.

Shortly after his diagnosis, we were put in touch with the Dup15q Alliance. It was so refreshing and encouraging to connect with other families who are going through the same things we were. One of our passions is to assist the alliance to increase awareness of this rare syndrome. Every year, the alliance hosts a believe 5K walk, worldwide. For the first time, Denver will be taking part in this amazing fundraiser. I am asking that you participate in this fundraiser opportunity, either by registering to walk with us in September, or donating to our fundraising goal.

I know we, like so many other families, will continue to rely on the resources the Dup15q Alliance provides as we continue this journey throughout Declan's life. Every donation will make an impact and I hope you will consider supporting this organization.

Will you BELIEVE with us? Here's how:

• Click the Donate button on this page to contribute to the mission of the Dup15q Alliance
• Walk with us! Together, we will walk on September 16th at Belmar Park in Denver. Click the "Register to Walk" link to sign up!

My DUPER IS SUPER!

Love,

Charles, Ryan, Declan, and Kingston Holmes