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Rare or Remarkable?


The definition of rare is not occurring very often or not found in large numbers. Independently, rare diseases are just that. Our son's disease affects less than 100 people in the world. That's a small number.


If you're like I was before Brooks, you probably didn't realize Rare Disease Day is celebrated the last day in February (TODAY!). It is an important day for our community because on Rare Disease Day, our numbers can be BIG. By coming together to spread awareness, we gain understanding and support that wouldn't exist otherwise.


The truth is, rare disease affects almost 1 in 10 Americans. That doesn't sound like a small number anymore.


Since Brooks was diagnosed with SMARD two years ago, not only have we connected with other SMARD families, we have connected with lots of other rare families. The details of our journeys are different, but the overall experience is the same.


We face challenges in every direction from getting a diagnosis to everyday care, insurance, supplies, equipment, education, and lack of treatments. 90% of rare diseases have no FDA approved treatment. Rare families support each other in so many ways, sharing tips, supplies, and just words of encouragement. I have friends I may never meet, but I care deeply for them and their children. We have to fight for everything, for ourselves and for each other, and we will never stop, because there is always more to do.


But we do get tired and we appreciate your help. We appreciate your social media likes and shares. We appreciate your love and support. We appreciate your voice. We appreciate you, more than you know.


A few synonyms for rare are odd or isolated. We have felt that. Sometimes being rare hurts and it seems no one can understand. But Google also gives words that are similar to rare: remarkable, special, and precious. Our son Brooks is a pretty special guy and his journey to this point has been nothing short of remarkable. We can't do it alone. The difference between rare and isolated versus rare and remarkable is your love and support along the way.

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