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A little sunshine to brighten Rhea’s day

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

Update: Rhea loves to sing. Here are two videos of her singing: Star Spangled Banner and You Raise Me Up.

 

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Caine’s Arcade

I saw this post on Mike’s blog and it was just a title that didn’t say much and a video to click on. I couldn’t click on it right away so I just dismissed it, telling myself I’d watch it, eventually, but knowing that chances were I would never get a chance to. I’d forget, I’d get caught up on whatever it was that was important at the moment, you know, all the excuses we like to use on a daily basis.

However, for some unknown reason, I remembered and went back to check the video. I’m glad I did. It’s about a 9 year old boy, who built an elaborate cardboard arcade inside his dad’s used auto part store, about to have the best day of his life.

 

Help Caine’s Scholarship Fund:
cainesarcade.com

Caine’s Arcade Online:
facebook.com/cainesarcade
twitter.com/cainesarcade

Credits:
Directed by Nirvan
twitter.com/nirvan

 

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Why are we so insecure about our parenting choices?

A little girl was at the playground with a little bowl full of cheez-its. It was one of those snack bowls with a lid on. She kept teasing other kids, extending it to them, and when they’d give her any attention, she’d say “My cheez-its,” and run away. I didn’t really like her attitude, but I just sat and watched. The mom was busy, talking to another mother. And the little girl kept going. Until her little brother saw her.

The look on that little boy’s face was of someone who had just witnessed his puppy being run over by a truck. It was devastating. I didn’t know if I felt bad for him, or happy that the girl got caught. I opted for just trying to keep a straight face, of course. The little boy grabbed his own hair and yelled, “Hey! Those are my cheez-its!” And that’s when the mom saw them.

I couldn’t hear the exchange between mom and children, but I saw the girl staying on the bench with the mother while the boy walked away, happily snacking on his crackers. Next thing I heard was the girl crying to top of her lungs and screaming “But I want them! I want them now!” Her crying was so fake it was annoying. Seriously, I have tons of patience with kids, but that fake-crying act was just plain irritating. But I was proud of her mom, for sticking to it. For not making the boy give the snack back to his sister.

Then, all of a sudden, the screaming stopped. I looked right away, afraid it was because someone got tired of her tantrum and shot her dead. But no, what made her stop was the snack the mom was handing to her. Not cheez-its, though, and for that I’m proud of that mother.

It’s so hard to see parents disciplining their children in public places. Most of them seem ashamed for their children’s tantrums, when they shouldn’t. Children will test you. All the time. And they learn pretty fast that it’s easier to get their way when others are around, because they know mom and dad will do anything to avoid a scene. But why? Why are we so afraid to discipline our children in front of others? Are we afraid of being judged? Why are we suddenly insecure about our parenting when we were the ones who decided what was best for our children in the first place?

Kudos to the parents who let their children throw tantrums and don’t give in. It’s hard. But in the long run, it’s totally worth it.

 

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