Our brave beauty’s name is Valencia Bella. Together, her father and I raise her to be strong and courageous. She was born with amniotic band syndrome where the cords were wrapped around her legs so tight that it caused extensive nerve damage and near amputation. We have been blessed enough that she was able to keep her legs, but she is not able to walk or stand for exceptionally long periods of time. Through therapy and her amazing team of physicians, we have been able to somewhat increase movement, and she wears AFO’s and uses a wheelchair. She undergoes surgeries, procedures and therapy with a smile and pleasant attitude. She is walking and rolling through life with a positive attitude and an even bigger impact on all of those she meets.
Rare Disease Day is important to us as a family because we can bring awareness to this incredible birth condition in which the cause remains unknown. This day allows us to celebrate Valencia Bella more than usual because living with a rare disease is just as important as being treated for one.
Living with a rare disease and caring for a loved one with a rare disease present many day-to-day challenges regarding actions that most take for granted. For example, running to the store takes a “typical” family 10 minutes to be in and out, whereas a child with a rare disease requires equipment and time to be able to move freely throughout the store. It will take us twice as long to make a quick run to the store. Rare diseases also create a constant barrage of doctor visits, therapy visits, and an ever-changing timeline of possible conditions that could present themselves as we learn more about our rare disease’s symptoms. There is a lot to learn about rare diseases, even for the families living with them.
Equity in health means fairness and openness in treatment of conditions. It means getting what is needed for your disease, even if it’s not the so-called norm. It means having an understanding that this disease is a change in movement, not a loss of vitality. Rare diseases change our lives and how we do things, but they don’t not take away our willingness to push past barriers and reach new limits both through research and throughout life. Health equity means never having to accept the lesser version for your life because you require more accommodations.
As a family, we plan to bring awareness to Rare Disease Day by writing about it on our blog, wearing our stripes bold and proud, and celebrating the life that is our brave beauty for all that she is and all that she will be.