A little sunshine to brighten Rhea’s day

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.

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.

(Source: redheadcarol.com)

littlelea05:

That’s been my motto lately

littlelea05:

That’s been my motto lately

(Source: death-bef0re-dishonor)

77,672 notes

One’s life should be so arranged that it remains a mystery to other people, so that those who know one best in fact know one as little as anyone else, only from a slightly nearer vantage point.
Fernando Pessoa, ‘The Book of Disquiet’ (134)

(Source: musicwordscolourslights)

12 notes

Sometimes you have to stand alone…

Sometimes you have to stand alone…

4,761 notes

People aren’t either wicked or noble. They’re like chef’s salads, with good things and bad things chopped and mixed together in a vinaigrette of confusion and conflict.
Lemony Snicket, The Grim Grotto (via supprosetry)

1,439 notes

I hope that in this year to come, you make mistakes.

Because if you are making mistakes, then you are making new things, trying new things, learning, living, pushing yourself, changing yourself, changing your world. You’re doing things you’ve never done before, and more importantly, you’re Doing Something.

So that’s my wish for you, and all of us, and my wish for myself. Make New Mistakes. Make glorious, amazing mistakes. Make mistakes nobody’s ever made before. Don’t freeze, don’t stop, don’t worry that it isn’t good enough, or it isn’t perfect, whatever it is: art, or love, or work or family or life.

Whatever it is you’re scared of doing, Do it.

Make your mistakes, next year and forever.

Neil Gaiman

(Source: journal.neilgaiman.com)

3 notes

May your coming year be filled with magic and dreams and good madness. I hope you read some fine books and kiss someone who thinks you’re wonderful, and don’t forget to make some art — write or draw or build or sing or live as only you can. And I hope, somewhere in the next year, you surprise yourself.
Neil Gaiman (via bryannasimpson)

69 notes

thehealthywarrior:

DATE A GIRL WHO READS
by Rosemarie Urquico 
(In response to Charles Warnke’s You Should Date an Illiterate Girl)

Date a girl who reads. Date a girl who spends her money on books instead of clothes. She has problems with closet space because she has too many books. Date a girl who has a list of books she wants to read, who has had a library card since she was twelve.

Find a girl who reads. You’ll know that she does because she will always have an unread book in her bag.She’s the one lovingly looking over the shelves in the bookstore, the one who quietly cries out when she finds the book she wants. You see the weird chick sniffing the pages of an old book in a second hand book shop? That’s the reader. They can never resist smelling the pages, especially when they are yellow.

She’s the girl reading while waiting in that coffee shop down the street. If you take a peek at her mug, the non-dairy creamer is floating on top because she’s kind of engrossed already. Lost in a world of the author’s making. Sit down. She might give you a glare, as most girls who read do not like to be interrupted. Ask her if she likes the book.

Buy her another cup of coffee.

Let her know what you really think of Murakami. See if she got through the first chapter of Fellowship. Understand that if she says she understood James Joyce’s Ulysses she’s just saying that to sound intelligent. Ask her if she loves Alice or she would like to be Alice.

It’s easy to date a girl who reads. Give her books for her birthday, for Christmas and for anniversaries. Give her the gift of words, in poetry, in song. Give her Neruda, Pound, Sexton, Cummings. Let her know that you understand that words are love. Understand that she knows the difference between books and reality but by god, she’s going to try to make her life a little like her favorite book. It will never be your fault if she does.

She has to give it a shot somehow.

Lie to her. If she understands syntax, she will understand your need to lie. Behind words are other things: motivation, value, nuance, dialogue. It will not be the end of the world.

Fail her. Because a girl who reads knows that failure always leads up to the climax. Because girls who understand that all things will come to end. That you can always write a sequel. That you can begin again and again and still be the hero. That life is meant to have a villain or two.

Why be frightened of everything that you are not? Girls who read understand that people, like characters, develop. Except in the Twilight series.

If you find a girl who reads, keep her close. When you find her up at 2 AM clutching a book to her chest and weeping, make her a cup of tea and hold her. You may lose her for a couple of hours but she will always come back to you. She’ll talk as if the characters in the book are real, because for a while, they always are.

You will propose on a hot air balloon. Or during a rock concert. Or very casually next time she’s sick. Over Skype.

You will smile so hard you will wonder why your heart hasn’t burst and bled out all over your chest yet. You will write the story of your lives, have kids with strange names and even stranger tastes. She will introduce your children to the Cat in the Hat and Aslan, maybe in the same day. You will walk the winters of your old age together and she will recite Keats under her breath while you shake the snow off your boots.

Date a girl who reads because you deserve it. You deserve a girl who can give you the most colorful life imaginable. If you can only give her monotony, and stale hours and half-baked proposals, then you’re better off alone. If you want the world and the worlds beyond it, date a girl who reads.

Or better yet, date a girl who writes.

5,152 notes