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Sickle Cell battle faced by local teen
sickle cell

Story by Demarcus Green

 This Saturday June 19 is World Sickle Cell Anemia Day. According to the Mayo clinic there are 200,000 U.S. cases of sickle cell anemia per year.

Sickle cell anemia is a disease where red blood cells break down or shape into slimmer tinier cells than normal which can cause a shortage of healthy blood cells to help the immune system.

Symptoms vary to include the blockage of blood cells, pain, fatigue, and can last several years or be permanent.

Many people may or may not know that sickle cell is rare and serious because if not treated it can lead to strokes, seizures, loss of consciousness and much more.

Like others out in the world who go through this disease. Jay Lonon fights every day with sickle cell. Lonon, 14 and from Liberty County, was diagnosed with sickle cell eight months after he was born. His mother Shavonne Lonon said their fight with sickle cell has been a continuous journey.

Coming from a military family Mom was born in Germany and moved around a lot. However, Lonon was born in Savannah and has been here all his life.

His Mom said, “He was in the ER three times within the first two weeks. The ER doctor said it looked like he was anemic because his blood count was low. Then the next day he went into the hospital because he was not moving because he was lethargic. I had mentioned to them because they were giving him iron supplements that I had the sickle cell trait and that maybe that could have been why he was having so much trouble.”

Lonon went through a series of tests and was diagnosed with sickle cell anemia.

“Living with it in the very beginning, because I didn’t know too much about it was very hard,” Jay Lonon said adding he was constantly ill.

“I have journals still to this day that I would chart to the moon or the tides and rain,” he added after noticing that the weather affected his joints and how he was living.

At the time, Lonon was the youngest child in the children’s hospital in Savannah to start on the various medications needed to treat the illness and relieve the pain.

Lonon keeps a pill tray with all his medications and supplements on hand wherever he goes. In addition to his medications Lonon also has to get his eyes checked at least twice a year, get an EKG (Electrocardiography) to check his heart, and TCD (Transcranial doppler) to check the blood flow inside his vessels once a year. 

Despite the illness Lonon is like any other active teenager, pursing his passions and doing things most teenagers do.

He wants to fly in a plane but, right now, his body is unable to handle the atmospheric pressure changes. He did visit Gulfstream where he learned a bit about flying planes. While he has yet to fly, he was able to attend Camp New Hope for sickle cell, a seven-day; six-night residential camp for children ages 7-17 with sickle cell disease.

Mom said they manage well because of a strong support system.

“I was pregnant having a baby and Jay was having a sickle cell pain crisis,” she recalled. “My mom had to stay behind to be at the hospital with him while I stayed at the hospital to have the baby and we were in two separate hospitals. He was having a pain crisis and I couldn’t be there. That’s why it’s important to have that support system.”

The American Red Cross is planning a blood drive Tuesday June 15 at Connection Church located at 116 Patriot Trail, Hinesville, in Lonon’s honor. To sign up to donate blood visit:

Leading up to Saturday, Deloris Mitchell, Ph.D. Executive Director of Tapestry Connections, Inc., a Sickle Cell Organization organized a series of different events.

Stop by the SCD booth at the local Farmers Market Thursday June 17, between 3 p.m. and 7 p.m. to get SCD literature and a flashlight or red-light bulb to “Shine the Light on SCD.”

On World Sickle Cell Day Saturday everyone is encouraged to wear red.  There will also be a “Shine the Light” gathering at Dorchester Academy in Midway from 8:30 a.m. until 10:30 a.m. At noon tune into to WHNL 94.9FM for a special presentation on Conversations with Daisy Jones...” Sickle Cell Speaks.” Saturday evening folks are encouraged to use red lights in their windows, porches or vestibules from 8-9 p.m.

The Lonons are thankful people are raising awareness on this disease.

“You know Jay...he has had it to where they thought about putting a port in him because he was in so much pain crisis and getting monthly transfusions,” Mom said. “That I do appreciate people who donate blood because without it they’re quality of life would be worse than what it is now.”

Mom added, “I do feel honored that people are wanting to understand and educate themselves on sickle cell…now it seems a lot of people are shining the light on sickle cell. When before a lot of people didn’t know about it.”

Mom added that the illness has long-term issues and many afflicted by the disease struggle to secure job or disability income as well as constant healthcare needs.

But maintaining a positive outlook is something she and her son stress.

“At times you do get down and you get depressed because of everything that’s going on with your life,” she said. “You’re not, you know, as you would quote/unquote state as normal. But I always say even when you’re in pain or anything that there is a light at the end of the tunnel.”

“It’s not always cloudy every day. So eventually the sun is going to be a bright shining day. So, you cherish the little small moments. Whether if you’re going to the beach, playing in the yard with your family, going to the movies, or just going out walking enjoying sightseeing. You enjoy every moment of life. Life is precious and you need to appreciate those moments. So even when your down you think of it that you’re at least here to be able to see those moments. Don’t focus so much on the negativity that you have.”

Mom added to not focus on the things that can’t be done but to rather find opportunities in things that are thrown in your path.

Lonon said he doesn’t want to have sickle cell but deals he with it. Both understand sickle cell is important to those who are dealing with the disease and are fortunate avenues are being opened to raise awareness because sickle cell matters.

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