Dear Mr. President, My Life Is Worth Living

By Megan Crowley, March 7, 2024, RealClear Policy

As a teenager, I described myself as the “little girl who can’t walk, but always smiles.” I reflected on this youthful characterization often throughout the past month – ever since I learned that the Bidens invited Kate Cox to the upcoming State of the Union as their special guest.   

Kate Cox is a Texas mom who chose abortion after learning that her preborn baby had Trisomy 18, a condition that increases the risk of stillbirth, or infant death shortly after birth. Though Texas law prohibits abortions, it mimics all other pro-life laws in providing exceptions for medical emergencies endangering mothers’ lives. It allows doctors to use their medical judgment to perform an abortion if the medical emergency puts a mother at risk of losing a major bodily function, of which 71 such abortions have occurred in Texas since Dobbs.

Despite the media’s inaccurate portrayal, Ms. Cox was seeking an abortion because her child had a disability. Texas law protects unborn babies from disability discrimination abortion. She decided to travel out of state to obtain an abortion and became active in the raging national abortion debate. 

Politics aside, my heart goes out to Kate and her child. Having a child with a significant disability is daunting – which my parents quickly learned when I was diagnosed with Pompe disease at just 15 months old. Pompe disease is a rare, genetic, and life-threatening condition that causes muscle weakness, in the heart especially and causes significant breathing problems.   

Pompe disease used to be a death sentence for most children. Many babies diagnosed with it don’t survive beyond early childhood, if even the age of 2. When my parents’ doctor told them I had Pompe disease, he also told them to go home and enjoy the time that they had with me.  

Thank God they had hope in a better future for me.

My parents, especially my father, fought to find effective treatment avenues for me and spent my whole childhood loving and supporting me. Thanks to their selflessness, I’ve lived 27 joyful years. I defied expectations by achieving my bachelor’s degree from the University of Notre Dame in 2019 and receiving my master’s in social work at UNC Chapel Hill in 2021. All the while in a wheelchair and needing a ventilator to breathe. Now I work full-time for Make-A-Wish New Jersey as Assistant Director of Mission Integration.

Even if I didn’t go to college or have a great job, my life would still be worth living. My parents’ awareness of this reality inspired them to fight to give me and my brother the best and most normal life possible, even though I wasn’t “culturally perfect” or “valuable.”

My parent’s love and support contrasts sharply with the media’s narrative that disability is a death sentence – a narrative already disproven by advances in medicine and technology that are actively increasing rates of survival for babies with life-threatening conditions. Moreover, contrary to popular fearmongering, most fetal conditions don’t endanger moms

Tragically, President Biden and pro-abortion Democrats are stoking panic and fear throughout the nation to garner support for their vision of abortion on demand, without limit – even up until the moment of birth.  

They quickly exploited Kate Cox and her unborn daughter’s tragedy for this purpose. Noticeably, their agitated discussions excluded ideas on how society could support and encourage women like Kate aside from abortion. Simply stated, they chose not to favor life and all its wonderful potential for children born with a significant disability. They also operated on the assumption that Kate’s child – and any child diagnosed with Trisomy 18 – could never live a happy life. According to them, people like me aren’t even worth the effort. In so doing, they demean the lives of so many who live, love and thrive despite their genetic disorders and disabilities. 

Far too many women are pressured into abortion because of diagnoses like Trisomy 18 and other rare diseases. They are fed the lie that pro-life laws endanger their own lives, and that babies with disabilities are better off not even being born. 

The truth is that many babies diagnosed with Trisomy 18 and other serious conditions go on to defy expectations. When Trisomy 18 babies receive appropriate care and intervention, over 80% survive until discharge and nearly 60% live until at least their first birthday. Just look at Faith Smith, whose parents were pressured to abort her when she was diagnosed with Trisomy 18. Instead, Faith’s parents pursued proper medical care for her. Today, she is a teenager, living a beautiful life with her loving parents and four siblings.   

I wish that President Biden would highlight uplifting stories like ours at the State of the Union and encourage Americans to have hope in the face of these difficult situations, and to respect and appreciate the awesome beauty, value and dignity of each human life. Sadly, the Bidens will instead use Kate Cox’s tragedy for political gain.  

Our nation’s women and children deserve better. Women like Kate Cox deserve to know how abundantly their children can – and will – live if they are willing to meet them and give them a chance.   

My life is not perfect, yet even as a teenager, I recognized that my worth, happiness, and existence were independent of my physical capabilities. Even though I was a “little girl who couldn’t walk,” I was a little girl who “always smiled.”  

Not every child is perfectly functional or healthy. Yet every child’s life will shine light and joy on those who are willing to accept the responsibility of loving them.   

Megan Crowley, born with Pompe disease, is now a 27-year-old Notre Dame graduate who also achieved her master’s in social work at UNC Chapel Hill in 2021. She now works full-time for Make-A-Wish New Jersey as Assistant Director of Mission Integration. Megan and her father’s story was chronicled in a book,  “The Cure,” and inspired the movie “Extraordinary Measures” starring Harrison Ford.