Empowering children battling rare diseases through access to much-needed medical equipment.
Committed to helping children soar!
At Mes Papillons Foundation, we aim to honor the legacies of Amira and Kelyn by empowering children with rare genetic diseases. Just as butterflies grace the world with their beauty and uniqueness, we believe these children, despite their challenges, have the power to shine brightly and make a lasting impact.
Our mission is to provide financial assistance to children with rare genetic diseases, helping them access essential medical equipment not typically covered by insurance. By doing so, we hope to alleviate some of the burden that comes with managing these conditions, allowing children to lead healthier, more fulfilling lives. (For a detailed list of rare diseases, refer to the National Organization for Rare Disorders Database for a comprehensive list of Rare Disorders/Diseases.)
Amira & Kelyn’s Story
Amira and Kelyn Kingsberry's story highlights the devastating impact of Niemann-Pick C (NP-C), a rare and progressive genetic disorder. NP-C is often referred to as "childhood Alzheimer's disease" due to its similar cognitive decline and neurological effects, but it also affects other areas of the body, including the liver, spleen, and lungs.
The rare condition is caused by mutations in genes involved in lipid metabolism, leading to the accumulation of fatty substances in various organs, which results in severe damage. Symptoms can vary but often include progressive loss of motor skills, cognitive decline, seizures, and difficulties with movement and coordination. These symptoms typically start in childhood and worsen over time, making NP-C a particularly tragic disease, as it robs children of their abilities and, ultimately, their lives at a young age.
Although NP-C is considered rare, with an incidence of about 1 in 100,000 to 120,000 live births, it is believed that many cases go undiagnosed or are misdiagnosed. This can delay treatment and significantly reduce the quality of life for those affected. The rarity and complexity of the disease pose challenges in raising awareness, obtaining early diagnosis, and providing effective treatments.
Amira and Kelyn's brief lives, marked by their struggle with NP-C, remind us of the urgent need for increased research, better diagnostic tools, and support for families facing such a devastating diagnosis. Their story is also a reminder of the preciousness of life and the importance of cherishing every moment with loved ones, especially those who are affected by rare and often misunderstood diseases.
How You Can Help
Your thoughtful gift to Mes Papillons will directly help families of children with rare diseases access essential medical equipment that is not typically covered by insurance. Every dollar you donate will assist in providing mobility equipment and other critical resources to the children we serve.
To determine eligibility for a financial grant from Mes Papillons Foundation, families must refer to the National Organization for Rare Disorders (NORD) database to check if their child's condition is listed. Additionally, the following documents are required:
Letters of support from your child's medical care team (e.g., pediatrician, neurologist, physical therapist, etc.).
Proof of insurance denial for the necessary medical equipment.
Your donation will make a significant impact on the lives of children with rare diseases who need specialized medical equipment to improve their mobility and quality of life.
“Caring for a child with a rare genetic disease is a heavy load to bear. Finding financial support to better meet the needs of children with rare genetic diseases is at the heart of this foundation. We want to lend a hand in carrying these loads.”
— Dr. Francemise Kingsberry
Our Story
Francemise and Hassan Kingsberry's heartbreaking journey with the rare disorder Niemann-Pick C is a powerful testament to love, loss, and the strength of the human spirit. Their two daughters, Amira and Kelyn, were diagnosed with this devastating genetic condition, which ultimately claimed their lives—Amira at the age of 4 and Kelyn at 5. Watch their story and learn how they turned tragedy into purpose by founding Mes Papillons.