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When I Have to Answer Hurtful Questions About My Daughter's Rare Disease

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Some ask me on occasion, why does you daughter walk that way? Is her disease contagious? What are “they” going to do about her condition? Some people will stare in public and whisper to one another and point. Some have bullied my child and some have been her greatest supporters. Many will see my daughter with a smile on her face but don’t see what goes on behind closed doors. They don’t see the emotional side. The side that cries at night and says she is tired of being in pain. The side that wishes she wouldn’t walk different and have to have multiple surgeries. The side that cries before getting put to sleep before being operated on. Only being able to do physical activities “as tolerated.” Wishing she can participate in cheerleading or gymnastics without having to worry about breaking her legs. Having more scars compared to the scars I’ve had in my whole lifetime growing up as a child. The side that asks, “Mommy why me?”

No, Blount’s disease is not contagious. No, we don’t know what will happen in the future when she becomes an adult. Blount’s disease is a rare bone disease that does not have enough research or a foundation supporting this condition. This is a disease that affects under 200,000 kids in the United States. It can lead to deformity, arthritis, or osteoporosis in the future. This is a disease that needs more awareness.

There is no disease so rare that it does not deserve attention. Without research there is no hope. Some people may get tired of my constant advocacy posts and unfollow my site. But that’s OK. I’m not raising awareness so people can feel sorry for us. I’m raising awareness because I have a daughter who is tired of being operated on and I’m a parent who is tired of not getting answers. We shouldn’t have to fight this journey alone. And I never know who may need my raging courage for setting the world on fire with my truth. So I will continue to raise awareness for my daughter and others who are battling Blount’s. I will continue to advocate until there is a change. These children are not their illness. Their illness doesn’t define them. Their strength and courage does.

I believe the worst thing about a disability is that people see it before they see you. It is up to us to make our children’s voices heard for Blount’s. I have slept in a hospital chair, skipped meals and cried from fear and joy. I have become an expert on my child’s condition. I am a strong advocate and I have had to make life changing decisions. I am the parent of a medically complex warrior. And I will continue to raise awareness for my child because Blount’s disease matters just as much as my child does.

Follow this journey on Anneliese vs Blounts Disease

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 15, 2016
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