Meet our daughter, Bella Duff. She is a vibrant, intelligent 11 year old girl whose life has been changed by a diagnosis of Small Fiber Neuropathy. This condition causes burning pain or complete numbness in her arms, legs and face. She also suffers with headaches, dizziness and extreme fatigue. Some episodes of numbness can be so severe she needs to use a wheelchair, or is unable to use the part of her body that is numb. The road to diagnosis was very difficult for us, as we faced doctor after doctor, and specialist after specialist who could not explain to us what was happening to our child. (See her story below when we opened her Caring Bridge page) Finally, Johns Hopkins All Children's Hospital in Florida took interest in her case. They did extensive testing, including a skin biopsy which showed that Bella's body was attacking her nerves due to a condition called Small Fiber Neuropathy. This diagnosis is so rare in children that we are currently fighting with insurance for coverage of the IV treatments that she needs. Every day is different for Bella except for one thing- her smile.
Bella is the third of our four children to face a complex medical diagnosis, and our family has bonded over incredible medical difficulties. A long time ago we coined the phrase "Built Duff Tough", and have used it as a reminder in times of great stress that the strength of our love is bigger than anything happening to our family.
We appreciate everyone who follows Bella's story on Caring Bridge, and keeps our family in their thoughts and prayers.
Original Caring Bridge Post from January 2018:
Bella Duff is an active and engaged 10 year old girl who wants to be a vet when she grows up, and dances as much as she walks. Bella has two brothers who suffer with severe medical conditions. (You can see their stories on their sites at https://www.caringbridge.org/visit/bennyduff
) She also has a 7 year old sister who has no health complications. She dearly loves her siblings. Playing and being with them is the highlight of her days.
A year ago Bella started to present with random neurological symptoms (dizziness, ear pain, headaches, neck pain, joint pain and swelling, auditory and visual disturbances) We took her to doctors, had labs and scans done, and began (as I describe it) a "Hansel and Gretel" type hunt for the problem. Every doctor seemed to have a bread crumb, but none got us out of the forest. :-) She was diagnosed with cervical and joint hypermobility in November. She was prescribed physical therapy, and restricted from pretty much being a kid. No running. No jumping.... and - worst of all- no horseback riding. Horses are the true love of her little life. We continued to search, feeling that there was much more to be discovered. Especially having two boys with a brain condition that originates in their occipital lobe, and presented with similar symptoms.
January 3rd Bella woke up feeling worse than usual. She was extremely fatigued, and having severe dizzy spells (I had taken her to the pediatrician the day before for the dizzy spells). I home school my 4 children, and we were up in the classroom. She couldn't focus and was so very tired, so I made her a bed with a pillow in the classroom, and asked her not to get up without my help. Bella, however, is a stubborn one, and hates to ask for help. The following scene plays out in slow motion in my head everyday now. I turned from my desk, and saw her standing (I was, ironically, on hold with the pediatrician about her dizziness) I saw her standing wrapped in her blanket. I asked her what she was doing. All she said was "Mommy, I'm dizzy." and as I got up to help her she started to fall backwards, her head hit the wall at the very back and snapped her neck forward, and she fell to the ground. She was crying, and I sent one of the children to get ice as I tried to calm her down, but I could not even move her to put ice under her head. She said we looked blurry and then she said "Mommy, I can't feel my arms." A few minutes later "Mommy, I can't feel my legs." I called 911 and she was transported by ambulance to the hospital.... and she has not walked since. She was able to use her arms and hands the next day, and we expected her legs to respond, also- but they haven't. CT scan ruled out traumatic injury, and our daughter was sent home in a wheelchair.
We took her to UNC who diagnosed "dysautonomia", a disorder of her central nervous system. They told us that her brain can completely misunderstand sensory input, and when she hit her head on the wall, it shut down feeling to her arms and legs. They said that this disorder can cause all of the symptoms she is experiencing, and they are originating in her brain. Every time it "misfires" -- she suffers. She has good days and bad days, but -so far- no days with feeling in her legs. On Friday, during a practice with her olympic science team, she lost feeling in her left arm, and an hour later she lost feeling in her right arm, also. That episode lasted about 6 hours before she could move them. We, as parents, believe that "dysautonomia" may just be another bread crumb. A true diagnosis, but there is more to discover. Our next appointment is with UNC Complex Diagnostics to continue necessary testing, and find out what more there is to Bella's condition.
We believe that any day she could wake up and walk again. We tell her and her brothers and sister that any day she WILL wake up and walk again. Until then, we will continue to talk to doctors, meet with specialists and find the answers we need. We thank you for your support on this new journey. Every day presents new challenges. One breadcrumb at a time....