Empowering children battling rare diseases through access to much-needed medical equipment.
Committed to helping children soar!
The vision of Mes Papillons Foundation is to honor the legacy and lives of Amira and Kelyn through serving and helping children with rare genetic diseases to grace the world with their presence and lives, like beautiful butterflies. Our mission is to provide financial assistance to children with physical, medical challenges like Amira and Kelyn, in order to help them gain access to much-needed medical equipment not covered by an insurance plan. (See the National Organization for Rare Disorders Database for a comprehensive list of Rare Disorders/Diseases.)
Amira & Kelyn’s Story
Although Amira and Kelyn Kingsberry are sisters, they never had a chance to meet each other due succumbing to a rare genetic disease called Niemann-Pick C (NP-C). NP-C, known as childhood Alzheimer’s disease, affected their mobility among many other areas in their bodies. It is estimated that NPC occurs in 1 in 100,000-120,000 live births. Unfortunately, many cases are either misdiagnosed or undiagnosed, which makes determining the true occurrence in the general population challenging. Amira lived until she was four and a half and passed away in 2010. Kelyn, similarly, passed away in 2020, just shy of five and a half years of age.
How You Can Help
Your thoughtful gift to Mes Papillons will directly help financially support the medical, equipment needs of families of children with rare diseases. Unfortunately, there are medical equipment these families depend on that are not covered by most insurance plans. Every dollar that you donate will help equip the children we serve with the necessary medical equipment for mobility .
In order to determine eligibility for a financial grant from Mes Papillons Foundation, families should refer to the National Organization for Rare Disorders (https://rarediseases.org/for-patients-and-families/information-resources/rare-disease-information/) database to see if their child's disorder/disease is listed. In addition, letters of support from your child's medical care team (e.g. pediatrician, neurologists, physical therapist, etc.) is required. Proof that the medical equipment needed for your child isn't covered by your insurance is also necessary.
“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 lost their 4-year-old daughter Amira to a rare disorder called Niemann Pick C. Ten years later, they lost their 5-year-old daughter, Kelyn, to the same disease. Watch their story and learn how they turned tragedy into purpose by founding Mes Papillons.