Our Girls
Amira
When Amira was born, everything seemed normal. Although there was a concern involving a bright spot on her liver discovered during an ultrasound, she seemingly progressed well in utero and passed all the newborn screenings upon birth. She was born healthy. She grew to be a happy child who loved to sing and dance and would occasionally be found pretending to write as she had often seen her parents doing. Her favorite song was “This is the Day” by Fred Hammond, which she demanded that her parents kept on repeat every day. Amira knew how to have fun and loved to be doted on by her father as “daddy’s girl.”
Around the age of three, we noticed that her once confident steps became unsteady as she seemed unsure of her footing and began cruising furniture. This beautiful and stylish little girl who could be found at any given moment running from place to place around the house, seemed to be fearful of falling. Alarmed, we scheduled her three-year-old check up with her pediatrician. After hearing about what was happening and conducting her own assessment, the doctor’s eyes mirrored the same alarm we experienced, as she shared that Amira appeared to be regressing in her development and that she needed to be seen immediately, by a specialist.
Securing an appointment with the neurologist took about a year. Within that year, her health greatly declined to the point that Amira could no longer walk on her own; she had very little energy, and she also had trouble swallowing. The neurologist tried various medications to help Amira with energy, but nothing helped as we remained with no diagnosis for her health issues. All we were told was that she had a neurodegenerative disorder. The neurologist also referred Amira to another pediatric specialist who was an expert in neurodevelopmental disabilities. This doctor informed us that Amira was malnourished and needed to have surgery to have a g-tube put in. Amira was in the hospital for a month where she received coordinated services from numerous providers, including physical, occupational, and speech therapists; neurologists, pediatricians, gastrointestinal doctors and surgeons.
Not only was whatever Amira was facing at the time scary, it was also costly. She needed a specialized car seat and wheelchair and numerous other expensive medical devices and equipment. We were left to manage her care and make her as comfortable as she could be. Unfortunately, within a year and half’s time, Amira’s neurodegeneration and heath decline was so great, she passed away in her sleep in October of 2010.
Kelyn
Strikingly similar in resemblance to her sister, Amira, Kelyn was beautiful as well, but she was born a twin. In this picture, as you can see, Kelyn is seated. She is seated because she wasn’t able to stand on her own during this point in her life. Kelyn, much like Amira, appeared to be fine at birth. An ultrasound during pregnancy revealed the same bright spot on her liver, but this was not of concern to doctors. Although she was born prematurely, Kelyn easily overcame the challenges that preemies often face and was out of the hospital in a few days.
Kelyn was a loving child who loved music, dancing, her family, and her toys. It was easier to gauge her development alongside her twin sister, Keren. However, because of our previous experience with Amira, we paid very close attention to our children’s development. As you can imagine, dealing with a medically fragile child with rare challenges and shortened lifespan can keep parents attentive, alert, and even on edge when it comes to their children’s health.
Around the age of one and a half, we noticed that Kelyn had trouble digesting food. In addition, her development seemed to lag behind her twin as it related to her speech and movement. While she could walk, she seemed unsteady and wanted to be carried. Because of frequent ear infections, we decided after consulting with her pediatrician to take her to an ear, nose, and throat specialist. Even after undergoing outpatient surgery to receive ear tubes, Kelyn continued to take tentative steps. As we neared her third year of life, we advocated to get her quickly to a neurologist. Thankfully, Dr. Erin Regan listened to our concerns and was able to have Kelyn seen at Duke within a month’s time.
After a battery of tests, the neurologist connected us to a geneticist who had us, Kelyn, and our other children undergo genetic testing. By fall of 2017, Kelyn was diagnosed with Niemann-Pick C (NP-C) and confirmed that Amira had the same disease. Some of Amira’s cells had been kept at Columbia University. Although we were beyond sad, we were also relieved to finally know what mysterious illness had gravely impacted Amira’s life and now was impacting Kelyn’s.
Because of our advocacy, we were able to secure quality specialists and medical service providers to serve Kelyn. Unfortunately, once again, the aggressive nature of NPC impacted many parts of Kelyn’s body. In March of 2020, she passed away in her sleep. She was able to live a year longer, we believe, due to our advocacy and prior experience with the disease.
Mes Papillons Foundation is dear to our hearts because during our journey caring for our precious girls we found out that there were many items needed for their care that weren't covered by medical insurance. We were greatly aided by people and programs that offered us assistance even when we didn’t ask. Without their help, it would have been much more expensive to care for our girls. We hope that you will consider making a donation to alleviate the weight that families dealing with caring for medically fragile children bear.
Francemise & Hassan Kingsberry