Despite the many social advances we have made in the last several decades, “difference” is often still associated with “defect,” and as a result there is a tendency to underappreciate, underestimate, and devalue the lives of those with disabilities. Having a daughter with a rare genetic condition gives me unique insight into how those with disabilities are viewed and treated. Discrimination exists both overtly and covertly.
Read MoreRare isn’t really all that rare….according to the National Organization for Rare Disorders (NORD) 1 in 10 people live with a rare disease, and this does not include the millions, living with an undiagnosed, rare condition. About 7,000 rare diseases have been identified and advances in genomic testing are finally allowing us to identify and discover new conditions. However, the journey does not end with a diagnosis. The fight for appropriate medical care and services is ongoing in the rare disease community. Here, we highlight nine of the most significant issues affecting the rare disease community (and as you will see, one thing can lead to another):
Read MoreWriting this post is really difficult, because it plays to one of my worst fears as a parent of a child with special needs. The timing is ironic, as I literally just sat with a friend in a coffee shop over the weekend and shared this fear….that my daughter, Taylor, will be treated poorly or subjected to verbal or physical abuse, and that I will not know about it. Every parent fears this, but it is most concerning to me because my daughter is nonverbal. She would have no way of telling me what happened.
Read MoreWe have all experienced it.....you are having an eventful shopping trip to Target (one where you claim you are going to buy sunscreen, aaaaand $175 later.....) You have cleared out the store and are waiting patiently in the check-out line. You look into your shopping cart and see your child staring, aghast at a person in a wheelchair and then loudly proclaiming, "Mommy, why is that boy drooling?!"
Read MoreTaylor is a joyful and vivacious toddler who has a rare genetic condition called PURA Syndrome. Taylor teaches us lessons everyday, especially how to be tough in the face of adversity. This blog is dedicated to telling her story, raising awareness, and inspiring hope.
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