When Jesse Ridgway said Down syndrome is “objectively shitty from a health perspective,” I don’t think he realized how many families he was speaking about.
Not just families affected by Down syndrome.
My daughter has Skraban-Deardorff Syndrome, a rare genetic disorder caused by a spontaneous WDR26 mutation that occurred while she was developing in the womb. She is autistic, nonverbal, G-tube fed, has epilepsy, developmental delays, and possible heart-related concerns. She wasn’t diagnosed until she was seven years old because the syndrome is so rare that many doctors have never even heard of it.
And that’s exactly the point.
There are thousands of genetic disorders. Some are diagnosed before birth. Some aren’t discovered until years later. Some come with seizures, feeding tubes, wheelchairs, therapies, surgeries, intellectual disabilities, autism, or lifelong medical needs.
The families living this life know better than anyone that these conditions come with challenges. We don’t need someone on the internet explaining that.
What we need people to understand is that a diagnosis is not the same thing as a burden.
If Ryanne’s diagnosis had been known before she was born, someone looking only at a medical chart would have seen a list of problems. What they wouldn’t have seen is her smile. They wouldn’t have seen the joy she brings to her family, the lessons she teaches her teachers and therapists, or the way she changes the hearts of the people who meet her.
A genetic disorder may explain a challenge. It does not define a person.
Our children are not mistakes. They are not tragedies. They are not burdens.
They are human beings whose worth is not determined by a chromosome, a mutation, a diagnosis, or a prognosis.
Because once we start deciding the value of a life based on genetics, we should all be asking ourselves where that line ends.
The internet is exploding with opinions about Jesse Ridgway and the choices he made. Maybe it’s time to spend less energy talking about him and more time talking about our children. Share their stories. Share their smiles. Share their accomplishments. The more people understand the lives behind the diagnoses, the harder it becomes to reduce them to a medical condition.
@McJuggerNuggets
#DownSyndromeAwareness #RareDiseaseAwareness #DifferentNotLess #DisabilityAwareness #EveryLifeHasValue