Presley Heuton is a 2-year-old, pig-tail wearing, hug-giving, independent girl. Sounds like most 2-year-old girls, right?
But Presley is an extra special little girl because she works hard every day to overcome the challenges she faces as she lives with Phelan-McDermid Syndrome (PMS). PMS is a genetic disorder caused by a deletion on the 22nd chromosome. It can cause intellectual disability of varying degrees, delayed or absent speech, low muscle tone, delayed motor skills, epilepsy and varying other health conditions.
Despite her diagnosis, her mom, McKaylee Heuton (Family & Educator Coordinator/CA) says Presley is “the definition of ‘though she be but little, she is fierce.’ She is so strong for how little she is!” Presley recently learned to sit up on her own, and she loves to sit and pass a ball back and forth.
Proclaiming PMS Awareness
McKaylee and her husband, Tyler, have been working to raise awareness about PMS, which is a rare disorder, with only about 1,900 people worldwide diagnosed. The Heutons have been told there are probably more people who have the disorder, but it is often misdiagnosed. “We are trying to get the word out to the world about this syndrome and spread more awareness to help current diagnosed families and families that have not been diagnosed yet,” McKaylee said.
One of their recent advocacy activities was working with Iowa Gov. Kim Reynolds’ office to have the Governor sign a proclamation designating Oct. 22, 2018, as Phelan-McDermid Syndrome Awareness Day in Iowa.
The PMS Foundation set a goal to have a proclamation signed in each state, and the Heutons took on the task of trying to secure one in Iowa. They completed the necessary paperwork and stressed why it’s important to bring more awareness to PMS and the families it effects.
McKaylee and Tyler were successful in their pursuit, with Gov. Reynolds signing a proclamation declaring Oct. 22 as Phelan-McDermid Syndrome Awareness Day in Iowa. McKaylee, Tyler and Presley were on hand in the Governor’s office when she signed the proclamation.
McKaylee is a member of the PMS Foundation’s fundraising committee and helps with various fundraisers throughout the year. She is also part of “365 Days of Phelan Lucky,” a Facebook page run by the Heutons and three other families who wear their “Phelan Lucky” t-shirts for a year, take photos and write “a day in the life” posts so others can see the challenges and triumphs of kids like Presley with PMS.
When asked what she would like people to know about kids who have PMS, McKaylee said she would like people to know they are just like other kids. “If they are given the tools and opportunity, they can do amazing things,” she said. “I told my husband when Presley was first diagnosed that my biggest fear was that people were going to limit her on what she can do or not give her the opportunity to try. I have seen these kids accomplish so many things the doctors say they would never be able to do. They are all the most determined and hardworking kids you will meet.”
Heartland AEA in the Home
Because of the challenges she faces, Presley has been the recipient of services from Heartland AEA Early ACCESS providers since Jan. 2017. She currently receives physical, occupational and speech therapy, as well as assistive technology and special education consultation and family navigator services. McKaylee says having Heartland AEA staff come into their family’s home and work one-on-one with Presley was been “very important for her.”
“When we first started this journey, she was about 6-months-old and couldn’t even bring her hands together at midline while on her back,” McKaylee said. “She had very low muscle tone, and we struggled with feeding. Now she is an awesome eater, she can sit up unassisted and we are working on walking. She is also working on communicating using pictures to make a choice. She has come so far. If we would not have started services with Heartland AEA, life would be a lot harder for her right now.”
Having AEA staff model activities for the Heutons to practice with Presley in between home visits is also something the family has found invaluable.
“As for me, I would be a stressed out, overwhelmed mom without our AEA providers,” McKaylee said. “My favorite part about Heartland AEA’s services is that they collaborate with parents and teach them what they should be doing at home to help their child reach their goals. I love showing them (AEA staff) or telling them what new thing Presley is doing when they come and visit!”
Realizing a Passion
Through volunteering with the PMS Foundation and developing relationships with AEA staff, McKaylee started to feel a tug at her heart when it came to helping kids with special needs and their families. She knew she wanted to make a change in her career path. She applied for and was hired in late summer as a Heartland AEA Family & Educator Coordinator serving districts in Region 1.
“AEA staff also helped me find my own passion for helping other parents with kids with special needs not feel so alone or overwhelmed,” McKaylee said. “All of Presley’s therapists, consultants and family navigator have made being a parent of a special needs kid feel normal. They are all more like friends I can go to with all my questions. AEA staff has done so much more than just help Presley reach her goals—they have helped me reach mine as well.”
And though she’s only been in her new position a few months, McKaylee already feels like following her heart was the right thing to do.
“I love being able to connect with other families and parents and help them through this process and make new friends along the way. “Heartland AEA and Early ACCESS have been the best things that have happened to our family and me, not just because I get to do my dream job, but because they have opened so many new doors for me and helped me realize my passion for helping families and children with special needs.”