Age: 4

Sibling's Name(s): Ryan - sister

Parent's First Name(s): Jordan & Leslie

Parent's Last Name(s): Maxon

Mutation or Deletion: Deletion

Diagnosis Date: 07/07/2020


How did you feel when your child was first diagnosed?

Hearing Koolen-de Vries for the first time was very overwhelming. When Bowen was first diagnosed he was 1 of 6 at our Children’s Hospital, stretching five states in the Midwest. Thankfully our care team was quick to establish a care plan and that feeling of overwhelmed faded into acceptance and determination. We, along with his team of specialists, are determined that Bowen will never feel limited because of his KdVS diagnosis.

What does your KdVS individual love the most?

Bowen has had a love for hockey since infancy. He is quite popular at our local hockey rink.

How has KdVS affected your entire family?

KdVS has made our family celebrate the small victories. We no longer sweat unmet “milestones” and know that every child develops at their own pace. Watching our younger child help guide her older brother is one of the blessings that comes with KdVS. We know he has helped shape her into a kind and patient leader.

What is the biggest misconception about being a KdVS parent or an individual with KdVS?

We are always told “I don’t know how you do it” in reference to the doctor and therapist appointments that come with having a medically complex child. We always say that we do it just as anyone else would, we love our child and will do whatever he needs to have a happy and healthy life. While people may think they wouldn’t be able to balance the needs of a kiddo like Bowen we know that they would make it work just like we have. Being a parent comes with a hectic schedule regardless of the medical status your child has.

What would you tell newly diagnosed parents about KdVS?

Take it one day, one appointment at a time. A new diagnosis is overwhelming, but we have a community of KdVS families willing to support new and veteran families when the load gets heavy.

Why are you asking people to donate to the KdVS Foundation?

We want to create awareness of KdVS within our community for Bowen. We have always been very open about his syndrome and the challenges he faces as we never want him to feel like it should be hidden. Raising funds for research and awareness of KdVS is one of the best ways we know to show him that.