Rare disease in young adults: from endearing to troublesome
Kristi
State: Minnesota
Congressional District: MN04
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Diseases
Endocrine Disease, Genetic Disease, Rare Disease
Issues and Challenges
Kristi has encountered: Disability, Invisible Illness
My Story
Raising Rare
Prader-Willi Syndrome
Having a child with a rare condition is beyond life-changing- the stress and fear are real. As I held our sweet baby for the first time I wondered if we would ever be able to take her home. I longed to hear her cry or see her move. I prayed for her to eat, to open her eyes. I never had these concerns with my other children. With my first four, I worried about whether I’d get any sleep; with my youngest I feared falling sleep. I felt the need to continually check on her to make sure she was breathing. The fear of losing her was far greater than anything I had ever experienced.
Raising a rare child changes you. Therapies and doctor visits rule your schedule. Your friends and family don’t understand why you can’t attend certain events or even schedule a lunch date. Doctors are needed for far more than just routine check-ups or vaccinations; they are essential to getting a diagnosis and treatments to help your child have the best possible outcome. I longed for a normal ear infection appointment- a visit that didn’t suck the breath from my lungs.
School years should be some of the best years for children, but not for those with rare diseases. Schools were often unwilling to make the necessary changes to keep my child safe. Food, in one form or another is what we all need to stay alive. FOOD is what can potentially take my daughter’s life. Trying to get school staff to understand how dangerous food can be was exhausting. Food in the classroom made it impossible for my daughter to learn. Throughout her school years we had to fight to remove all food from the classroom. This was not a matter of convenience. It was about her ability to learn, to live.
Teen years are difficult even under “normal” circumstances. Add in a rare disease that affects every system of the body and these years can wear down even the strongest parent. Not only did my daughter have to deal with a body that was fighting against her, but we also had to fight to get the only FDA approved medication for her condition. I will never understand how someone sitting behind a desk, with no medical training, has the authority to deny a medication that a doctor prescribes. This has been and will continue to be one of the hardest, most frustrating battles we face.
My daughter is now a young adult, and her medical conditions are not going away. The differences between her and her peers have become more apparent. She needs safeguards in place. She needs me, and she will always need some level of support.
My daughter is strong, brave, resilient, and she truly loves who she is. But her life is different from her siblings’ lives. She has many questions and may take a little more time to figure things out, but given the time, she will. Unfortunately, as an adult, she is often dismissed by people. Their patience runs too thin; her responses are not fast enough. As a child, people would wait. As an adult, people get annoyed.
The world is not designed for those with different abilities. The world wants everyone to be the same, to fit into a mold that has been deemed “normal.” As my daughter gets older the cuteness wears off and what people used to find endearing, now they have no time for. Her disability is invisible, her life is different but no less valuable than anyone else’s.
Her life matters!
As she has pointed out to me and many others, “We all have something. I am just lucky that I know what I have so the doctors know how to help me. Not everyone is as fortunate.”
My Motivation and Inspiration
My daughter and everyone living with a rare disease are my inspiration. If they can keep fighting, so can I.
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