Villaluz Keeps Overcoming Challenges

Thankful For Support

Since being diagnosed with a rare disease last summer, Wolf Point High School junior Kailayla Villaluz has made giant strides in her life. She has remained a full-time student while being a participant in tennis, National History Day and school plays while maintaining excellent grades at the school.

She along with her parents are now facing additional challenges including the possibility of losing some funding for medical supplies.

“Her medical issue is one she will have for the remainder of her life,” CoCo, the mother of Kai, said. “This brings with it many different ongoing and expensive costs. Grants and financial support have allowed us to pay for some of the costs associated with her medical issues.”

There is an uncertainty, however, how long the grants will be offered and what additional expenses may occur in the future.

Two of Kai’s medications are now going to be close to about $2,000 out of pocket each month.

The family is thankful for their insurance and grants. “It’s going to be an on-going conversation for the rest of her life,” CoCo said of the costs.

The family also keeps exploring grants or other resources. Other people have also provided links to the family for possible grants.

A gofundme account has been set up for her on Facebook.

“It has not been easy for our family to request money, however, we have felt honored and humbled by the kindness and generosity shown to our family, both emotionally and financially,” CoCo said.

They each expressed how grateful they are to many community members including those at the school. “Thanks for everybody who has been so accommodating,” Kai said.

Kai was diagnosed with severe pulmonary arterial hypertension, Group 1, last summer. The condition affects the arteries in the lungs and the right side of the heart. PAH has an estimated incidence of only two to four cases per million children. The student always has a remodulin pump on her body that continuously delivers a life-sustaining medication to help open her pulmonary arteries and reduce strain on her heart.

Kai has been having a few struggles with her pump site during the past several weeks. Moving it from her arm to her stomach was a bad experience for her. She has been able to compete in tennis, but switching sites from one arm to another can impact her power.

CoCo has been impressed with her daughter’s involvement during this school year. “I think she’s done an amazing since we’ve come back,” CoCo said.

If Kai does experience difficulties during an activity or at school, coaches and teachers need to call the parents because the parents are trained for what to do. CoCo explained there aren’t any nurses in Montana sanctioned to help with the site changes. “It’s so rare. It’s not something they are familiar with,” she said.

Kai’s latest achievement is being accepted for a Bitterroot Wilderness Internship in Missoula for a month this summer. A parent needs to accompany her for the learning experience.