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Spreading light, love, and support

"Shine Like the Star You Are."

Our Mission

Emersynn Isla Shining Star Foundation supports families who have a child utilizing palliative or hospice care due to an incurable diagnosis. We strive to improve the quality of life for these families and their children by providing emotional and financial assistance to ease burdens, celebrate joys, and create lasting memories. In addition, we aim to bring awareness to the importance of pediatric palliative and hospice care.

What is Pediatric Palliative Care?

Pediatric palliative care is a specialized approach to caregiving for children with long-term health conditions. The primary objectives are to enhance the quality of life for the patient and their family, minimize suffering, provide comfort for the child, offer emotional support for the family, and collaborate with all healthcare providers to prioritize the child's well-being.

What is Pediatric Hospice Care?

Pediatric hospice care is a specialized approach to providing compassionate support to children with serious illnesses who are not expected to recover. It is designed to enhance the quality of life, comfort, and care of patients. Pediatric hospice can be integrated with existing medical care, allowing patients to continue with treatments while receiving hospice support. Children can remain eligible for hospice care for an extended period, as determined by their physicians.

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Emersynn's Story of Light & Love

Lovingly known as our little shining star, Emersynn Isla Kaintz was born healthy and happy on September 17, 2021. By day 3, she began struggling with feeding and weight gain. After undergoing several hospitalizations, diagnostic tests, countless bloodwork, and genetic testing, Emersynn's parents, Nicholas and Jennifer received the tragic news that she had a rare incurable genetic disorder called Arthrogryposis Renal Dysfunction Cholestasis Syndrome (ARC).

 

Sadly, she suffered with cholestasis of the liver, tubular renal dysfunction, club foot, hip dysplasia, ichthyosis, severe failure to thrive, hypotonia, uncontrollable itching, and congenital deafness. With a prognosis of 6-12 months, Nicholas and Jennifer were left heartbroken, confused, and scared.

Despite such a devastating diagnosis, Nicholas and Jennifer promised to provide Emersynn with a beautiful, meaningful life, no matter how long she was with them. They, along with her older siblings, created a bucket list, celebrated every month, and made each little moment count. With compassionate support from the Children’s Hospital of Philadelphia Pediatric Advanced Care Team and Lehigh Valley Hospice nurses, Emersynn defied the odds and lived her entire life at home with her family.

 

On March 16, 2023, Emersynn passed away peacefully in her parent's arms, one day shy of 18 months. Her beaming smile, contagious giggle, and awe-inspiring bright light touched the hearts of many. Emersynn's memory will shine on forever!

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