Standing strong: Siblings battle rare disease

By Rick Watson

Suther Family

Gage Suther, 5, and his sister, Stella, 6, have been diagnosed with Fanconi anemia. Their family, Homewood residents, needs support to afford travel for treatment. Photo by Shay Allen

Matt Suther of Homewood had lost his job with a local  maintenance company last July when he and his wife, Chelsea, discovered that their 6-year-old son Gage had contracted an upper respiratory infection. When doctors drew blood, Gage’s platelets came back at 50. Normal readings fall between 144 and 400.
The physician said the low readings could be the result of the infection, but when Gage returned a few weeks later, the readings were still at 50.

This resulted in a trip to the hematology clinic at Children’s Hospital of Alabama and within a few weeks the diagnosis was in — Gage had Fanconi anemia, a rare and dangerous disease. Shortly after Gage was diagnosed, they learned that their other child, Stella, who is 5, also has the disorder.

Often abbreviated to FA, Fanconi anemia is an inherited genetic recessive disorder that leads to bone marrow failure, making it extremely likely that children will contract leukemia and cancer.

“We were devastated,” Chelsea said. “Some people say they feel like they were punched in the stomach when they hear news like this, but it felt more like I’d been stabbed in my soul. All I ever wanted was to have children, and to have both of them affected by FA, I can’t think of anything more devastating.”

Although Stella is not yet in bone marrow failure, Gage is, and the family is preparing for Gage to undergo a bone marrow transplant.  According to the Fanconi Anemia Research Fund, the average life expectancy for a patient with FA is 24.7 years, although there are now patients living into their thirties and beyond.  Patients who have had a successful bone marrow transplant and been cured of the blood problem associated with FA still must have regular examinations to detect cancer, the foundation said.

During a recent interview, Chelsea quickly wiped away the tears when Gage came into the room. Her blue eyes sparkled and her face lit up as she said, “Hey Buddy, what have you got there?” Gage offered up his Mario game with which he was playing. “He’s all about Mario and music,” Chelsea said  with a smile. She won’t discuss the painful topics as long as the children are within earshot. Regardless of what the data on FA patients show, Chelsea and Matt refuse to let go of the belief that their children can beat the odds.

Chelsea said she keeps on a good face most of the time, but sometimes it’s not easy.  “I honestly wouldn’t want to be here without them,” she said.
The fact that there is no known cure makes it worse for the Suthers. “I never thought I would say, I wish it were something as simple as leukemia, because if it were just leukemia, it would be better,” she said.

When this ordeal started out, leukemia was their worst fear, because they’d never heard of FA.

When they were waiting for a diagnosis, FA was one of the possibilities that came up during their research.  “It scared me so badly that I couldn’t even read about it,” she said.

Currently the Suthers are in a watch and wait stage. “It’s like there’s this huge countdown and you don’t know where the clock is,” Chelsea said.
Doctors are waiting on Gage’s blood count to get low enough to perform the bone marrow transplant, but not low enough for him to rely on blood transfusions for survival. The more transfusions he has, the more complicated the transplant becomes. So far, Gage has not had to have any transfusions, but he’s come close a few times.

Once Gage’s body gets to a point where the bone marrow transplant can be performed, the family will take him to one of the centers specializing in FA bone marrow transplants in New York, Boston, Cincinnati, or Minnesota. The couple is trying to decide between New York and Minnesota where the results appear to be more promising.

The Suther children both have insurance that covers most of the medical procedures, but it will not cover the expenses incurred by the family during the procedure.  The Ronald McDonald house offers affordable lodging and local transportation to and from the hospital for family members during the child’s stay, but the air travel, food, and other expenses the family incurs will be considerable.

Once Gage’s blood values get low enough, doctors will give him chemo and radiation to stop his immune system. This normally takes about seven days. During this delicate procedure, he will be in a sterile  environment. Then they will administer the new bone marrow intravenously. The new bone marrow finds its way to the bones and his body adopts the new marrow as his own. But for now, it is wait and see for the Suthers.

To look at the children, it’s difficult to believe they have any health issues. “They eat well, and they play well,” Chelsea said. “They are not sick as one might imagine.”

Chelsea, who is 36, graduated from Berry High School and Matt, who is 33, graduated from Homewood High. While they didn’t know each other in high school, they shared the same circle of friends. In 2003 she was working at a local convenience store where Matt bought gas and snacks. He was too shy to talk to Chelsea at first, so she decided to ask him out.  They later  were married and started a family.

After being out of work several months, Matt returned to his job with Residential Maintenance Incorporated before Christmas.  Chelsea home schools the children and works nights at Sephora.

She said she and Matt are holding strong for each other. “That’s a real blessing,” she said, “but there’s an elephant looming in the room and you can’t forget about it, even for a second.”

If you would like to donate to help with the travel expenses and other  costs incurred by the family, you may go to any local Branch of Regions bank  and make a donation to the Gage and Stella Suther charitable account or mail a check to:

The Gage and Stella Suther  Charitable Account
C/O  The Homewood Star
PO Box 530341
Birmingham, AL 35253

See this story and more in the April 2011 issue of The Homewood Star.


3 responses to “Standing strong: Siblings battle rare disease

  1. The Suther Family

    Thanks so much for helping us bring awareness to the dreadful disease that my babies face and battle everyday!

  2. I too have friends dealing with Fanconi anemia.God bless this family and all those dealing with this or any disease that threatens the well being of children.,anyone whos family is blessed with healthy children please send any amount to the Suther family.But for the grace of god this could be your family…

  3. I’ve known Chelsea and her family since she was two years old. She is one of my favorite people here on earth.
    What a lot of family love and support the Suthers have!
    Please make sure to donate if you can.
    Blessings to Chelsea, Matt, Gage and Stella!

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