When Kinsley Geurds was born in Hopewell six years ago, she was just like so many children, a happy, healthy baby girl. But things started changing fast. 

“At about two months old, we noticed she began to start turning blue, and from then on, it was a whole list of medical issues, from seizure disorder to dismobility, and more,” said Kinsley’s mother, Pat. 

Then began a series of visits to hospitals all over the country—Seattle, Boston, Philadelphia. 

“Seven or eight top specialists–neurologists—concurred that they had never seen a brain formed like this,” Pat said. “They did all kinds of genetic testing, and there is no diagnosis. They actually said that whatever she has, she may be one-of-a-kind.”

And though Kinsley loves going to school and is a positive and spirited little girl, the medical issues the family contends with are troublesome; many times, it has been an uphill battle with insurance companies. That’s what inspired Pat to write a bill, introduced into state legislature early this year.

“I write children’s books, so I am an experienced writer,” Pat said.” And I decided I needed to write a bill for the New Jersey legislature to pass. Basically it states that the attending physician of a child with complex medical needs will have the last word instead of an insurance company when it comes to treatments and services that a child needed. I have interviewed many healthcare professionals, from pharmacists to nurses, and they are being drowned in paperwork because this is not the case. It just doesn’t make sense to me that the MD of an insurance company as opposed to the specialist who knows my child’s specific needs should be the one to dispense the advice.”

While Kinsley’s disabilities are severe—she is not walking and can basically only speak the words, “mommy” and “I love you”—Kinsley’s spirits are high. 

“People who meet her just instantly fall in love with her,” said Pat, who has four other children besides Kinsley. “She is the happiest, most cheerful little girl.” 

Kinsley is a student at Hopewell Elementary School, enrolled in a program that fully integrates children with and without special needs. “The PEECH Program (Preschool and Early Education for Children of Hopewell) is a wonderful one,” Pat said. “They have been amazing with my daughter.”

Pat Geurds of Hopewell wrote a legislative bill to help children with complex medical needs in honor of her daughter, Kinsley (above).

Pat says Kinsley has been denied critical health services and resources—a gait trainer (a wheeled device that would help Kinsley walk independently and safely), an activity chair and, crucially, a stander. All of these devices help Kinsley with walking and mobility.

“Because she cannot put pressure on her bones, getting a stander was crucial,” Pat said. “And now that she has gotten taller, she has outgrown all that equipment. We put in for new equipment in mid-December and are still waiting for approvals.”

Needed medications have also been an issue. Back in 2015, omeprazole, an acid reflux medication that Kinsley had been taking since she was 16 months old (which gave her relief from the acid reflux and spitting up that accompanied it), was denied by insurance. Two weeks after Kinsley stopped taking it, she began vomiting blood. She needed an endoscopy and blood transfusion and had to spend two weeks in the hospital, as the replacement antacid was not working for her. 

“That is when I sat by her bedside crying and thinking, ‘Why is she being denied basic medicine that her doctor prescribed because the insurance companies are telling me she can’t take it?’” Pat said

Pat’s frustration was compounded when she once again ran into another obstacle, this time in getting proper feeding equipment for Kinsley. In March of 2017, Kinsley was placed on TPN (total parenteral nutrition, a method of feeding through a vein to provide nutrition), while still taking formula through a J-tube (a feeding tube that goes through a child’s stomach and small intestine). 

In September of 2018, Kinsley stopped all J-tube feedings and became solely dependent on TPN. However, Pat said, too much time on TPN can lead to organ failure. 

“She really needed a feeding pump, which costs $700, and would get her stomach moving a bit and help her organs,” Pat said. “We were denied one in November 2019. Then you have to appeal. It has been four months, and we are out of appeals.”

The setbacks just kept coming. Kinsley was last hospitalized this past November for a line infection. Then, her nursing hours were cut on Dec. 4, from 20 hours to 12, which, Pat feels, “was ludicrous. In November she had just come out of the hospital, and she needed the care.” Eventually, Kinsley did get the 20 hours of at-home nursing help reinstalled.

All of these issues just made Pat even more certain that the bill that she had written back on April 12, 2019 has to get passed.

Assemblyman Anthony Verrelli introduced the bill this past January. The bill, numbered A823, is simply stated. It “Requires health insurance carriers to provide coverage for persons 18 or younger with diagnoses complex medical needs.” As of press time, the bill has moved to committee review.

“When you see beautiful children struggling, you just want to do even the smallest things to help them,” Pat said.

Should it be put into law in New Jersey, Pat has no intention of stopping there. 

“I am doing a lot of advocating to get notice of it,” she said. “I want it to get to the federal level and now I have several politicians pushing for it. I need to reach as many assemblymen and women and senators that I can.”

Should the bill get passed, the Geurds family would view it as a win-win, not just for Kinsley, but for parents all over New Jersey, and perhaps, eventually, the entire country. “I have met with other parents and discovered a lot of them just don’t have resources because they don’t know about them. There is early intervention, help with Medicaid, organizations where people can help if you have a child with major health issues, and give the parents a night off. There are a lot of programs for families with special needs, and I want all those New Jersey families to know about them. I’d like to see the info dispersed, maybe through all-inclusive pamphlets given out in doctors’ offices or a website that can be one-stop shopping for those parents, with all the support information they need.”

In addition, Pat has a Facebook group called Handful of Hope: Children with Complex Medical Needs, which she encourages parents who are in similar situations to join. Members share information and brainstorm new ideas to help both the children and families. It has also been a sympathetic ear between, and among parents and healthcare professionals who deal with children who have complex health issues similar to Kinsley’s. 

“When you see beautiful children struggling, you just want to do even the smallest things to help them,” Pat said.