My name is Jessica Hindes. My husband and I and our three children live in Water Valley.
Kaydence is 9, Isabella is 7 and Hudson is 6.
On April 17, 2018, our lives changed forever.
After seven-and-a-half years, we got the call that the doctors finally had a diagnosis for our daughter Kaydence.
We were elated because this meant we could finally understand and help our daughter with her disability.
Our elation quickly turned to fear as we were told our daughter has BPAN, a variation of NBIA (neurodegeneration with brain iron accumulation), an extremely rare degenerative and life-threatening disease with no cure and only symptomatic treatment.
Our daughter is reliant on us for almost every aspect of her daily life, which most people take for granted.
She already suffers from severe developmental delay and intellectual disability.
She has significant difficulty communicating and performing fine and gross motor tasks.
She has difficulty feeding herself and cannot dress or undress herself; she requires assistance for walking and will most likely remain untoileted for the rest of her life.
Others like her are already advanced into the further stages of this disease, which is characterized by dystonia (painful muscle spasms), dysphasia (difficultly speaking), visual impairments, Parkinsonism and dementia in their teens.
Their life expectancy is shortened with their final years involving wheelchairs, feeding tubes and round-the-clock care.
Our daughter is truly a happy and beautiful little girl and it breaks my heart to know that we could lose her sparkling spirit far sooner than we ever imagined.
There are less than 250 people in the world who are suffering from this disease. There is currently no government-funded research. As a result, local fundraising has become critical for families who are affected by BPAN.
Researchers worldwide are working to understand this horrible disease with hopes of finding a treatment or even a cure, but they can’t do this without the help of donations to further their research.
For families like ours research = hope.
My hope is that with enough awareness and research, this disease won’t be able to steal any more precious BPAN warriors’ futures.
Any donation, no matter how big or small, truly makes a difference in finding a cure.
I support the work done by the NBIA Disorders Association to support families dealing with the daily challenge of NBIA disorders, and to seek treatments and cures for BPAN.
The volunteers and staff work day in and day out to provide support and work with researchers seeking treatments and cures for this devastating disorder.
Feb. 29 was national Rare Disease Day and Cremona School will be helping facilitate a fundraiser to help raise money for research.
Alternatively donations can be made to https://nbiadisorders.salsalabs.org/beatbpan/p/jessicahindes
Jessica Hindes,
Water Valley
