“I don’t know what a normal childhood is”, said Wynne’s mother. 

Five-year-old Wynne Lockwood is the granddaughter of Marco Island Academy’s Key Club Kiwanis Advisor, Marie-Lynn McChesney. She was diagnosed with Kleefstra Syndrome, a rare genetic disease that affects the 9th chromosome. Given that Kleefstra Syndrome is a novel disease, awareness is vital, as it affects those suffering both mentally and physically. 

“Wynne was not meeting her age-appropriate milestones. She didn’t walk, communicate or play like our older daughter,” said Wynne’s father. 

Due to the close proximity and relationship with the Kiwanis Club, Marco Island Academy’s Key Club decided to step in. Over the past three years, members of Key Club have decorated the school purple for Kleefstra Syndrome Awareness and raised money through bake sales and bracelet sales. This awareness proved Wynne isn’t going through her fight alone. Her family has helped her every step of the way and they have their own story to tell. 

Wynne’s mother, Marie Lockwood, has tried to provide Wynne with as much of a normal life as possible. Marie enrolled Wynne at Midvale Preschool in Michigan, and she attends the school three days a week.

Marie said that at preschool Wynne is like any other little girl and loves to play on the playground, in the play kitchen, in the play salon and anything else that allows her to use her imagination.

When she isn’t at preschool, Wynne goes to Life Lab, a therapy-based school to prevent Wynne’s regression. Wynne has grown to love Life Lab and has even grown to develop a special bond with her occupational therapist. 

Aside from schooling, Wynne enjoys spending time participating in after school activities, as well as activities that she loves to do with her family. Wynne loves to be in nature, as some of her favorite hobbies include playing in the snow during winters and soaking up the sun during the summer. Marie explained that being outdoors is one of their favorite ways to spend time as a family. Together the Lockwood family enjoys swimming, sledding, and going on hikes.

Marie and her husband Matt have a rigorous schedule, as they have to balance their own work schedules, Josie and Wynne’s schooling, therapy, and appointments. Marie continued to explain what a typical week for Wynne would look like. Mondays and Wednesdays consist of Life Lab, where Wynne does applied behavioral analysis therapy, occupational therapy, speech therapy, and music therapy.

“I know a lot of the parents of kids with Kleefstra Syndrome said that once they started music therapy, it opened up different pathways in their kids’ brains, so they were able to accelerate in other areas.” Due to all of the therapy, Marie said that Wynne has been talking more, engaging more, and making more friendships and connections with other kids. 

Wynne’s schedule doesn’t end there. On Tuesdays, Thursdays, and Fridays, she goes to preschool. This is where she likes to play with her friends and use her imagination. At her preschool, she also has a special education teacher, an occupational therapist and a speech teacher that all come in to see her. 

Wynne’s weeks are burdensome enough, and this doesn’t even include Matt, Marie or Josie’s schedules. This is exactly why Marie says that weekends are for family time, as it is the least stressful part of the week. Marie still uses different points in the week to keep her looking forward to the weekend. She says her favorite moments during the week include, “The times that I get to spend with the girls one on one.” 

Family time is special to Marie, but she also loves seeing the bond that Wynne and her older sister, eight-year-old Josie share. Wynne and Josie love to cook and bake together, Marie explained. “We started her (Wynne) pretty young, in trying to get her to be independent with everything. She’s really got the hang of so many things now.” Marie also discussed how Josie has been a role model to Wynne and taught her to be more independent. 

With Wynne going through so much schooling and therapy, Marie explained that “it has made us stronger as family, as well as the focus on Wynne really affecting our family”.  She explained that any sibling of someone with special needs doesn’t get the same attention, but both Marie and Matt strive to find the balance between Josie and Wynne.

Marie also discussed how she and Matt have learned to talk everything out with Josie. “Josie has become an advocate at home, and she has learned to stand up for other kids who don’t have a voice. I know she is going to be like that forever because of her sister.”