Meet Kai

On May 11th, 2019, Kate and Drew welcomed their baby girl, Kai, into the world. While Kate experienced a typical pregnancy, things quickly took a turn for the unexpected on the day of Kai’s arrival.

In delivery, Kai got the umbilical cord wrapped around her neck, preventing her from being able to take a breath. As Kate recalls, “Everything moved so quickly. The staff was able to get her assistance but without the large inhale to jump start her lungs, doctors anticipated it would take time for her to work up to being able to breathe on her own.”

While in the NICU, Kai underwent many tests and doctors grew concerned that she had low tone, meaning her muscles and reflexes weren’t working as hard or as quick as other babies. After a couple of days, it was apparent something else was going on.

Three weeks went by and Kai was still in the NICU. A neuromuscular blood panel showed that she had Nemaline Rod myopathy, a rare muscle disorder characterized by severe muscle weakness, caused by a mutation of the ACTA-1 gene.

“On a cellular level, Kai’s muscle fibers are misshapen which impacts the way she can contract her muscles, which ultimately leads to severe muscle weakness from head to toe. It takes fifty-two muscle pairs to swallow, so Kai is not able to swallow; the secretions impact her eating and respiratory function. Since day one of life, Kai has been tube fed. First it was a tube down her throat and then when she was one and a half months old, she had surgery for her g-tube,” Kate shares.

During the same time, Kai also received a trach to support her respiratory function. Coming to this decision wasn’t easy, but as Kate connected with other individuals who shared this diagnosis, she quickly noticed a pattern that those with this diagnosis who had trachs were thriving.

“I came across a woman who shares Kai’s diagnosis. She is close to my age and was absolutely thriving. She was going out in the city, hanging out with friends, and living a full life. It caught me off guard because clinically I was told all the things Kai could not do, but through other’s experiences, I was seeing all this life to be had,” Kate gleams, “Nobody wants to put a permanent plastic tube in their child, but I tried to be educated enough to advocate for her at that time. This is what led us to elect Kai to get a tracheostomy at the same time as the g-tube. It has been a game changer. Kai having a trach enables her quality of life, not limits it.”

Since that day, Kai has had everything she needs to support her respiratory function. While she spent the first eight months of her life in the hospital, Kai has only had to be hospitalized once for illness since returning home. One time in the span of three years.

Kate shares, “We played a delicate dance at first but ultimately, we have tried to give her as full a life as possible. I feel deeply that it’s my responsibility to find adaptation to give her everything that any other kid would have.”

Today Kai is three-years-old, soon to be four this month. She is dotingly known as being a very sassy and tenacious little girl who loves to tease people and has the snarkiest laugh. She goes to pre-school, loves hanging out with her friends, and is obsessed with music, singing and dancing.

Reflecting on those early diagnosis days, Kate shares, “My number one advice is to find your people; by that I mean, find the experts that have the answers to questions that you’re looking for. Before I had Kai, I thought doctors knew everything. The reality is that not one person besides her specialty neurologist knew of her diagnosis. I felt so confused because I didn’t know how to care for my child from the medical professionals that were supposed to be teaching me.”

As Kate shares, sometimes navigating the stable seasons can be just as overwhelming as the high-alert moments:

“Most modern medicine has an emphasis on keeping the kids alive and handling the ICU moments. There’s not a lot of support for families for the rest of it. When you’re home and your kid is semi-stable, there’s not a network to catch people to support them in that space,” Kate explains, “A lot of the time, the mindset about these kids is solely survival: how do we keep these kids alive instead of how do we maximize these kids’ lives? If the caregivers have the support they need, they can think more about thriving.”

Gearing up for the future, Kate and Drew anticipate amazing things for Kai.

“Ultimately I want her to do whatever she wants to do. I joke that Kai is an acronym meaning ‘Kindness, Accessibility, and Inclusion’ because that’s what she has to teach everyone. My job is to give her an opportunity to be her. I make sure buildings are accessible, people treat her with respect and get out of her way. She is a powerhouse of a person in a little body. Kai is a queen and a boss; there is nothing dainty or ‘princess’ about her. She’s a mover and shaker.”

Time to get loud shouters!

Throughout the month of May we will be shouting loud for Kai!

So click here to shop now where every purchase in May will be used to purchase a special needs flotation device so that Kai can participate in aqua therapy as well as swimming with her brother and family.

To help support kids like Kai every month, click here to start a monthly subscription.