Reading a friend’s post I got to know Rhea’s story. Rhea Swearingen was born with Glycogen Storage Disease type Ia (GSD Ia), which means her liver can’t produce free glucose. It’s the most common of the glycogen storage diseases, but it’s still a rare condition, since it only affects one in every 80,000 children. The result of the lack of glucose is severe hypoglycemia, which can even be fatal. Reduced glycogen breakdown results in increased glycogen storage in liver and kidneys, causing enlargement of both.
Rhea was only diagnosed when she was 2 years old. Now she’s 17, she’ll be 18 this summer, although her body physically resembles that of someone much younger. Because of her enlarged liver her belly appears to be a bit large, and she has very fine and thin hair that doesn’t seem to grow much. But she’s a trooper, and she’s fighting the battle the best she can.
To keep her blood sugar level throughout the day and night and avoid hypoglycemia she takes cornstarch mixed with water 5 times a day (at 3am, 7am, 11am, 4pm and right before she goes to bed at night). Her diet is also very limited since her body does not metabolize sugars the same way most bodies do, she cannot have sugar, milk or fruit, nor anything made with those things.
Her and her family went through a lot over the years. As side effects of her disease Rhea developed gout due to high levels of uric acid in her blood. She also has extremely high levels of fat in her blood, both in the form of triglycerides and cholesterol. She is also in the beginning stages of osteoporosis.
Due to Rhea’s disease going for so many years without the proper treatment, she developed lesions on her liver that had a high likelihood of turning into cancer and she had to have several tests every 3 months, including an MRI to keep an eye on any growth or change in them. She entered a transplant list, first just for her liver and later for a kidney as well, and waited a long time for a suitable match.
On May 12th, Rhea’s family got a call from the hospital. There was a donor that matched Rhea. So they headed up to the Primary Children’s Medical Center in Salt Lake City, Utah. All was well and on May 14th the surgery was completed. She received both a kidney and a liver. This is exciting and at the same time very scary. Transplant is not a miracle cure, and it comes with its own risks and medications she will have to take for the rest of her life, but the quality of her life will be better. Now Rhea will finally be able to enjoy the simple things we take for granted. She will finally be able to have the chocolate cake and ice cream she so wanted and she won’t have to wake up 3am for cornstarch.
So here is what I’m proposing: take some time to write her a card. Not a get well soon, but a cheerful card. Maybe a thinking of you card. Just a card to help brighten her day. It will take you just a few minutes and it will cost you just a card (or piece of paper) and a stamp. You can even find nice cards at the dollar store, you don’t even need to spend much. Or if you feel crafty you can make your own. And if you can, spread the word. Let’s try to get her as many cards as we possibly can. Can you picture the smile on her face opening each card? I know I can.
Rhea Swearingen (inpatient)
c/o Primary Children’s Medical Center
100 Mario Capecci Drive
Salt Lake City, UT 84113