We meet several people throughout our lives. Some of them touch our souls in ways we never imagined and get us to look at things in a different light. For me, Chelsey is one of those souls. She has blessed my life and the lives of so many others.
11 years ago, Chelsey was diagnosed with Multiple Sclerosis (MS). In February 2019 she received her real diagnosis – Neuromyelitis Optica Spectrum Disorder, or NMOSD, an autoimmune disease that affects your eyes and spinal cord. It’s not very common — only about 4,000 people in the United States have it.
Late in 2018, Chelsey went into the hospital for an allergic reaction to an infusion she received for the MS. After coming home, she began to lose her vision and went back to the hospital. Her neurologist, convinced there was more going on with her, decided that more scans were needed and that’s when they discovered the NMOSD.
WHAT IS NMOSD?
Neuromyelitis optica (NMO), Devic’s disease or neuromyelitis optica spectrum disorders (NMOSD) are different names for the same condition. NMO is an autoimmune disease that causes inflammation in different locations in the central nervous system. The disease manifests itself through relapses (also called exacerbations or attacks) and the most common relapses are of optic neuritis (inflammation of the optic nerve), myelitis (inflammation of the spinal cord) or syndrome of the area postrema (inflammation of the an small area in the brain that causes nausea, vomiting and hiccups)
Can you imagine being the mother of 5 children and receiving this diagnosis after 13 years of being sick and 11 years living with a misdiagnosis?
You would never know it from this girl. She lives in a place of gratitude. She is so thankful for everything in her life even NMOSD.
It has given her the opportunity to become an amazing artist, provide for her family and be a spokesperson that can bring awareness to this disease.
When Chelsey began to lose her sight and fueled by the fact that she could not remember the color of her sons eyes, she began to think about color and to have conversations with her husband about it.
Chelsey decided that since she could remember color she would start to paint. The first thing she painted was a guitar. She chose a guitar because of her love for music and because she could still remember what it looked like.
There is an artist living inside this woman!
From the outside looking in, the world of NMOSD could not have received a better spokesperson to raise awareness about this devastating disease. Chelsey is bright, vivacious and happy. She is thankful and lives her life to the fullest in each moment.
HOW WE MET
Chelsey is a member of the PNPTribe where I have been a long time member. I began to see her posts and took note of her dramatic weight loss. Did I mention that she has lost over 150 pounds?? I knew she had been hospitalized and that she was ill, but I had not met her in person until February.
In February, we typically run the Hot Chocolate 5K. We decided at the last minute we would do this race – and walk it. My friend, PNPKathy, wanted to walk the race with Chelsey. Meeting Chelsey face to face has been one of the best highlights of 2019. Getting to meet her dad and her sweet family was icing on the cake.
We walked and talked. Her Dad was amazing with her. She talked with all of us including my husband David. She talked about what was going on with her, her family, her illness and her art.
I must say that Chelsey is not at all what I expected. She does not appear sick and has these incredible soulful eyes. She shares her story and wants to be sure that everyone around her feels important and loved.
Most people don’t get their life right. Chelsey is living proof of living right. Her motto is:
You can lose your sight, but you can never lose your vision.
Chelsey lives this every day. She has really, really bad days but the good ones outshine those. She lives in this moment and pursues her dreams.
Her impossible goal for 2019 was to have her art displayed in a public venue. In April, she had her first Art Show at O Gallery here in Nashville. She is also booked for commissioned art for the remainder of the year. One of her pieces was auctioned off and all the proceeds went to research.
Chelsey often wonders why but so little is known about NMOSD that she doesn’t focus on the unknown – she focuses on LIFE.
To learn more about NMOSD visit these websites: https://www.sumairafoundation.org/ and https://guthyjacksonfoundation.org/
To Find Chelsey – Visit her on Instagram at https://www.instagram.com/chelseytuckerart/
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Chelsey’s story is so inspirational, Kim! I can’t even imagine dealing with the hurdles she’s had to navigate. It makes me see my own much smaller challenges in a whole different light. Thanks for sharing her story!
It really does shed light on the small things we tend to worry about! Thank you for ready!
This is such a wonderful, inspiring post Kim. What a shining testament Chelsea is to the power of gratitude and a positive mindset. And her paintings are absolutely beautiful! Prayers & best of luck to her as she continues her efforts to raise awareness for NMOSD.🙏✨✨
She is such an inspiration and a truly wonderful person. I can’t wait to share the painting she did for us as we redo our sons room into a second guestroom! Thank you for stopping by!
Wow!! I got goosebumps. What an inspiration she is and the right mindset. Truly amazing and gifted artist. I’ve never heard of that disease before so thank you so much for sharing ❤️
I had never heard of it either until I met her. She is extremely talent and so very sweet!
What a lovely post about Chelsey!
I am so sorry that she was misdiagnosed with MS and now living with this rare disease!
Thank you for sharing this with us!
Hugs my friend!
She is an amazing young woman and so talented. I hope this will bring some awareness to this disease!
It’s horrifying to think a mother of 5 only received an accurate diagnosis after 11 years of living with a misdiagnosis. How beautiful that she lives in what you describe here as “a place of gratitude.” Chelsey is an inspiration. ❤️
~ Suzana Barton
Thank you Suzana. I so appreciate your kind words. Chelsey is an amazing woman!