WS Chronicle

By Nakisha Giovanni Long Isom 

Life with a rare syndrome, in the way I see it, is no different from life without a rare syndrome. How would I know? I was born with this syndrome, so I don’t know anything different. 

I am one of four children. Three out of four children have this syndrome, called Holt-Oram Syndrome. It only affects one out of every 1,000,000 live births. And in my family, we thought my father started it off, but recently we discovered it may have started from my grandfather. 

My father was born with short arms; his arms stopped where your elbows begin. He had four digits on each hand. I say digits because he didn’t have a thumb on either hand. But my father did everything for himself. He went to college and owned a store. So, growing up in a house where “I can’t” wasn’t an option. 

I was born with traditional arms but no thumbs and limited rotation on both wrists. When I was 34 years old, I suddenly passed out at work. After many tests, I was told I had a hole in my heart the size of a quarter. I had gone my whole life with no problems with my heart. At that time I had already had all three of my children and had played every sport there was to play as a kid – with no problems from my heart nor my hands. 

However, that day my life changed forever. I went to see a cardiologist who told me I needed open heart surgery. He also gave me the name of my syndrome, something I never knew I had until that day. I’ve never felt so scared and reassured at the same time. 

As I grew in God, I learned how to use this syndrome to my advantage. But that took me really getting to know God and learning what it is I’m supposed to be doing with this syndrome. Fast forward to today: I am a published author of a children’s book called “Nina’s Big Day.” I also created a support group online called “Living with Holt-Oram Syndrome.” 

On Feb. 28, with the support of the R.J Reynolds residences’ building and Novant Health organization, we will “light up” our city in the rare disease colors. This is a global campaign from the National Organization for Rare Disorders (NORD). The goal is to bring awareness to people living with diseases/disorders. The key word is “living” with these diseases, not just surviving with them. 

There’s a prayer called “The Serenity Prayer” that really speaks to my heart and it goes like this: “God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.” I had to learn to accept my hands for what they are. I can’t change the way I was born, nor can I change the parents I was born to. But with God on my side, I can live, and I can be happy. 

The wisdom God has given me was knowing he doesn’t give us more than we can bear. I know I’m different from others, but I know if I work hard, I can figure out a way to make things work for me. No, it may not look like everybody else, but it works for me and that’s all that matters.

It’s not how you get there that matters, as long as you get there.      

Nakisha Giovanni Long Isom is the founder of a support group for a rare syndrome called “Holt-Oram.” The group has 1000+ members all over the world. She is also a published author of a children’s book called “Nina’s Big Day,” which is about the first day of school for a little girl who has a disability/difference.