Living With Someone with a Rare Disease

By: Francemise Kingsberry

Being a caregiver for my daughters was one of the most challenging and, at times, frightening periods in my life. Can you imagine how scary it is to, literally, live to keep someone else alive? Both of my daughters, Kelyn and Amira, needed me to be their caregiver because they could not do for themselves, especially towards the end of their lives.

Another challenge I faced was trying to get to the “right” doctors and specialists to deal with and diagnose the phenomenon we faced. My daughter Amira began to lose milestones at the age of three and started regressing in her mobility and speech at an alarming rate. Because of its rare nature, doctors were unable to appraise her condition and to diagnose her. Unfortunately, time was not on her side because Niemann-Pick C hit her so aggressively.

There were also financial burdens such as paying copays for specialists like geneticists, neurologists, cardiologists, pulmonologists, etc.; copays for speech, occupational, and physical therapies; and the costs of medical equipment such as specialized chairs, beds, car seats, etc.; to surgeries and hospitalizations. This is why Mes Papillons Foundation is vital! The Foundation helps to assist with these costs.

As a caregiver 100% of the time, all of these things were taxing spiritually, emotionally, and physically. I lacked sleep and dealt with a high level of stress and anxiety all the time caring for both my daughters. I loved them dearly so I did whatever I could for them while feeling extremely fatigued and desperate for a miracle.

Although, there were so many more challenges, I wanted to highlight a more personal one. Living with someone with a rare disease is a very isolating experience. Although society has become more accepting of people with disabilities, there are still people who relentlessly stare at you and your loved one as you try to navigate the daily challenges as though you are a social pariah. Although their specialized chairs with all the equipment they held were cumbersome, we couldn’t afford to not use them. Dealing with a rare disease was also isolating because people simply didn’t understand what each daughter faced; Heck, sometimes I didn’t get it. I could usually tell the moment when someone understood that this incurable disease could be fatal.

There were also times when I chose to isolate myself. I often felt alone and if it weren’t for my husband, I really would have been alone. I battled shame and embarrassment. If I could do anything to remove the pain and challenges that my children and family faced, I would have done it and yet I was powerless. I had to work through these challenges in therapy.

When I decided to write this blog, I didn’t realize that November was National Family Caregivers Month. So, I want to end this by encouraging you, if you are a caregiver, to hang on. You are a hero in my eyes. I see you. I see your effort and I’m cheering you on! Hopefully, your situation will turn out better than mine did.