If the topic of hospice care for older adults is a difficult one for many people to think about, imagine having to consider making end-of-life decisions for someone whose life is just beginning.
That’s the situation Coopersburg area residents Jennifer and Nichoals Kaintz found themselves in two years ago, when their newborn daughter Emersynn Isla Kaintz received a devastating terminal diagnosis.
Despite their loss, the Kaintzes are determined to make Emersynn’s legacy a positive one through a 501(c)3 nonprofit Emersynn Isla Shining Star Foundation they created in her memory; an organization that is dedicated to helping other families receive the pediatric palliative and hospice care support many unfortunately do not have ready access to.
When Emersynn was born on Sept. 17, 2021 she appeared healthy and happy. However, within weeks her health declined, which led to extensive testing and unending anxiety for the Kaintz family.
“She was having issues losing weight,” recalled Jennifer, who said frequent visits to Lehigh Valley Hospital (LVHN) were followed by trips to Children’s Hospital of Philadelphia (CHOP). Eventually, the family finally received a diagnosis of Arthrogryposis Renal Dysfunction Cholestasis (ARC) Syndrome; an extremely rare genetic disorder which affects the liver, kidney and joints.
Emersynn also suffered from hypotonia, deafness, skin problems and failure to thrive, and the Kaintzes were told that she would likely not live to see her first birthday.
With two healthy older children who were ages 8 and 11, Jennifer said the genetic disorder diagnosis came as a shock, as did the realization that she would need an “overwhelming” amount of care for as long as she lived.
Early on, the family decided that they wanted to care for Emersynn at home because they didn’t want her whole life to be spent in hospitals; a decision that helped plant roots for the foundation.
“That’s really how our foundation was born,” Jennifer said, noting that they were able to spend more time with her thanks to the palliative care team at CHOP and the hospice program at LVHN.
Starting the Foundation
Emersynn’s health began to seriously decline four or five months before her death on March 16, 2023, and it was during that time that the Kaintzes began having serious discussions about creating a foundation that would honor her life by providing assistance to other families.
The Kaintzes were fortunate in the sense that Jennifer was already a stay-at-home mom and Nicholas Kaintz had the flexibility to take time away from work to spend with his daughter.
“We never left her side and I know that that is not a possibility for many people,” said Jennifer, who is now the foundation’s executive director.
One of the goals of the Emersynn Isla Shining Star Foundation is to give families whose work schedules present greater challenges than the Kaintzes’ did more time with their terminally ill child.
The financial assistance available from the foundation can also be used to help cover the cost of transportation to and from doctor’s and hospital visits or to purchase things like grocery and restaurant gift cards or medical supplies not covered by insurance. More information about financial assistance is available by emailing em*********************@gm***.com.
In some cases, Jennifer said, the time away from work might give the families of children like Emersynn a chance to do some of the simple things that were on a “bucket list” the Kaintzes made for her; things like going strawberry picking or for “a lick of ice cream” at a local ice cream shop. Or, through the foundation’s Beaming Bucket List Adventure initiative, the funding could pay for something more elaborate, like a day trip to a zoo, a sporting event or an aquarium.
Another special project undertaken by the Kaintzes as part of their foundation and in honor of Emersynn involves making care packages called Twinkling Totes.
The lovingly-curated purple tote bags are meant to provide emotional support and include meaningful items like books Emersynn enjoyed.
“We put little things in there that remind us of Emersynn,” explained Jennifer.
Each tote bag has a star theme because Emersynn was known as everyone’s “shining star,” she said.
In March, the foundation is planning a Twinkling Tote Collection Drive with a goal of creating many more of the bags for families in need of hope and support. To contribute to the drive, visit the Donate page on the foundation website for a link to their Amazon Wish List. On it are items such as slipper socks, fleece blankets, stuffed animals, brain games and more.
Other Ways the Foundation is Helping
One of the unique programs started by the foundation is its Memorial Stars program, which provides families who have lost a child who was a palliative care or hospice patient with a personalized star with coordinates, a commemorative certificate and a detailed revolving star chart, along with online features to view the star.
So far three families have received stars, Jennifer said, adding that they are then able to take their loved ones outside to look for it in the sky.
Although the Emersynn Isla Shining Star Foundation has yet to host any in-person events, she said they hope to hold a walk-a-thon this fall, along with a benefit concert. In December, the plan is to host a candle-lighting ceremony for families who have lost a child. International Child Loss Day is Dec. 9, and Jennifer said the goal is to have the ceremony coincide with this year’s observance.
The foundation is also in need of volunteers to help with future programming and other initiatives, and anyone who wants to help spread Emersynn’s light through love and support is welcome. For anyone interested in volunteer opportunities, there is a contact form through which to submit information on the website. Donations to the foundation can also be made online.
Kaintz said a Twinkling Tote sponsorship is available for $75, and donations in any amount are welcome.
For more information, please visit EmersynnIslaShiningStar.org.