Patient of the Month – Evie E.
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If you would like to donate to Soft Bones in honor of Nisha, please click the button below!
I was born with hypophosphatasia (HPP), a rare disease that has brought many challenges into my life, but has also taught me to be strong, persevere, and never give up.
Growing up, I had many surgeries. I remember how hard they were and how much I struggled, but I knew they were meant to help me. Looking back, I am thankful for those surgeries because they have helped me walk, grow stronger, and do things I might not have been able to do otherwise.
Living with HPP means seeing a lot of doctors, taking medications, and dealing with health challenges that most kids my age don’t have to think about. I also have seizures, which adds another challenge. One of the hardest parts is knowing my limitations. Sometimes I push myself too hard, like I did this past summer, which led to knee surgery this fall.
But I don’t let HPP stop me from doing the things I love. Swimming is one of my favorite activities because it relieves the stiffness in my legs and makes me feel better. I also love being outdoors, especially hunting and spending time in nature.
One of my proudest accomplishments was competing at the National Archery Championships in Florida last summer. It took a lot of hard work and determination, and I’m proud that I got to compete. It reminded me that even with limitations, I can accomplish amazing things. Being part of the Soft Bones Teen Advisory Council has also made a difference in my life. It has helped me learn to advocate for myself, ask questions at doctor’s appointments, and take a more active role in my health.
If there’s one thing I want people to know about HPP, it’s that everyone who has it is different. We all face our own challenges, but that doesn’t mean we can’t accomplish great things. Sometimes we just have to take a different path to get there, which may be a little harder than others.
Most importantly, my faith gives me hope through the hardest days. I know that one day in heaven, my body will be made whole, and I won’t have to face pain or limitations anymore.
HPP is part of my story, but it doesn’t define me. I have so much to be thankful for, so much to look forward to, and I truly believe the best is yet to come.
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