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Celebrating a Monumental Birthday 2 Decades in the Making

Celebrating a Monumental Birthday 2 Decades in the Making
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For my birthday last year, I wrote about how each year is a blessing. I still find that to be true. Each birthday is a cause for celebration, as none of them are guaranteed.

When I was diagnosed with SMA as a baby, it came with a devastating prognosis: I wasn’t expected to live past the age of 3. My parents were advised to take their daughter home and love me while they could. It’s the kind of news no parent wants to hear.

As you can see, that’s not exactly how my story went. My third birthday was 20 years ago. And I’m getting ready to celebrate another one tomorrow!

The past two decades haven’t always been easy. I’ve experienced my share of hardships. Some have left me with scars both seen and unseen. But with faith, family, and a little bit of stubbornness, I overcame those hardships to enjoy life and leave that third birthday in the dust.

Some might view receiving such a grim life expectancy as a hopeless situation, but I never have. Instead, I am grateful for every day I am given. Each new sunrise that I see — or sleep through, if I’m honest — brings another day filled with beautiful new hope for my family and me.

This year, I am celebrating my 23rd birthday. It’s a day that seemed unfathomable to some. In addition to being a blessing, it’s also a milestone achievement I could not have reached without the love and support of the amazing people who never give up on me.

Today, my life is full of joy, love, and fulfillment. I have accomplished far more than medical professionals thought possible all those years ago. I am living out a lifelong dream of becoming a writer. I have had opportunities to pursue meaningful philanthropy. I have traveled to beautiful places. And that only scratches the surface.

I don’t know what the rest of my life has in store for me, but I am confident that it will be filled with more exciting adventures alongside the people who continually help me beat the odds. It will undoubtedly contain humble gratitude for each breath I take, both on my own and with the assistance of my ventilator. And hopefully, there will be many more milestone birthdays to come.

My story could have had that sad ending that was predicted. I will always be grateful that God had other plans.

***

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

Halsey is a young woman living with SMA Type I. She received this diagnosis at the age of 15 months after her parents sought multiple doctors’ opinions and genetic testing — a process that has since been made much easier with today’s technology and understanding of the disease. Halsey is an avid reader and enjoys art and crock pot cooking. She also enjoys serving as a volunteer for a disability center in her home state of Indiana. She is now pursuing her writing dream with the hope of offering glimpses into everyday life with SMA and challenging readers to look for the positive in every situation.
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Halsey is a young woman living with SMA Type I. She received this diagnosis at the age of 15 months after her parents sought multiple doctors’ opinions and genetic testing — a process that has since been made much easier with today’s technology and understanding of the disease. Halsey is an avid reader and enjoys art and crock pot cooking. She also enjoys serving as a volunteer for a disability center in her home state of Indiana. She is now pursuing her writing dream with the hope of offering glimpses into everyday life with SMA and challenging readers to look for the positive in every situation.
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