More than Luck: Jackson's Story

How can someone feel "lucky" when confronted with a medical diagnosis that many people (including myself) knew nothing about? We are lucky because Jackson chose us, and the people he impacts in the community are lucky to get his light! When Jackson was born, we knew something just wasn't right. Luck brought us into the child find program when he was just 3 months old, introducing us to PT and OT services with professionals who gave him a fighting chance. Luck brought us adaptive preschool, where we met the most caring, kind and compassionate teachers and paras who dedicated their lives to supporting kiddos with special needs. Luck brought us genetic, endocrine, cardiac, and ENT specialists from Children's Hospital to help us reach a diagnosis for Jackson at age 6. Luck led the way when we were able to recognize early that Jackson had a lot to say, just did not know how to form the words. St. Mary's Life Center and FHW rehab were our weekly home for 10+ years. PT/OT/Speech therapy services. His luck continued when he was diagnosed with diabetes at age 10 and we found the best doctors in the valley who understood that Jackson was a zebra and listened to us when traditional treatment options were unsuccessful. Then Jackson began to speak and created his own Luck. He connected with peers and teachers and shared his love of football, fire drills, and friends. Luck brought him to schools in D51 that made his wishes reality. He has been a coach with FMHS football and basketball, creating connections that will last a lifetime. As a young adult, luck continues to follow my boy. He had begun to find his way into the workforce and is finding his way. Luck will continue to bless him on this journey. To us, Luck is our village, the community of the Grand Valley, the family and friends that support and encourage someone who is "different" but very special. I love what Lavendar Gray is doing to create luck by building villages of hope and support for people and families with special needs.

Jackson's Rare Genetic Disorder: 1p36deletion syndrome

Age: 20 now / 6 at time of diagnosis

Thank you for the opportunity to share.

-Heather Steele