Naomi and Jack are the light of our lives.
We’re Evan and Rebekah and this is our story.
Naomi was born in July 2021 and immediately became the center of our universe. Her big blue eyes and beaming smile made challenges with breastfeeding and hip dysplasia seem miniscule. We noticed her struggling to meet developmental milestones as early as two months old, but her pediatricians shrugged us off and chalked the concerns up to the worries of first-time parents. By six months old Naomi was far behind her peers developmentally, and she started physical therapy to help her catch up. Progress came slowly but surely. However, in December 2022 her therapists recommended additional testing to pinpoint what was causing her delays.
On May 12, 2023, exactly four weeks before her brother was set to be born, the world fell out beneath our feet: Naomi was diagnosed with SPG50. It was caused by inheriting two mutated copies of the AP4M1 gene – one corrupted copy from each parent. And that meant that Jack had a 25% chance of being affected too.
Jack was born in June 2023 and we sent off his genetic test kit two days later. For weeks we agonized over every movement he made – did he have it, or would he be the lucky one to escape the condition? In early July Jack landed in the hospital after aspirating formula. As we sat in the room watching him struggle to breath on his own, his genetic test came back: positive.
We hope and pray that Naomi and Jack will both be selected to participate in this potentially life-changing gene therapy treatment and hope you can help us in raising funds.
The Lockard’s Story
Meet Naomi and jack
Naomi and Jack are the light of our lives.
Naomi recently learned how to get into sitting on her own, and she expects everyone in her presence to clap each time she does so. She is babbling consistently and refers to her brother as “ba-vah.” She has a smile that lights up the world and is incredibly opinionated and strong-willed.
Jack has found his voice and coos loudly to get attention. He loves to look at high contrast items and is obsessed with ceiling fans. He can roll onto his belly but needs help to roll onto his back. They are happy children who, like all children, deserve every opportunity to live full and fulfilling lives. Thank you for your support in helping us achieve our dream of giving Naomi and Jack a wonderful experience on this Earth.