Hayley

Age:  10

Diagnosis:

Hayley was diagnosed with Juvenile Rheumatoid Arthritis (JRA) at 7 years old. A few years later, at age 10, she was diagnosed with Dermatomyositis.

Briefly describe the diagnosis in layman's terms if necessary:

JRA is a disease that causes her joints to become very swollen and painful. Cold, rainy days are the worst. Dermatomyositis is a connective tissue/ muscle disease that causes swelling of the muscles and skin leading to immobility, pain, muscle weakness, rashes on hands.

Names of doctors who have treated the patient: 

Dr. Michael Shishov

Says Hayley, "He's the best doctor in the world!!!"

Favorite hobbies and/or activities:

Singing, writing, painting, acting, swimming, horseback riding, reading, shopping, cooking with my mom, listening to music on my ipod, riding my bike.

Favorite things… :

God, Roller coasters, Johnny Depp, pandas, books, mommy's homemade spaghetti, shoes!!!!, jewelry, my puppy, musicals, doing voices, and eating steak!!

How has your illness affected your life:

It makes activities at school a lot harder to do because I cant participate in PE, and I cant jump rope with my friends because my ankles are sore.  And the other kids all want to know why I get to ride the elevator.  I can't sit on the floor at assemblies.

But I do get to go to a lot of activities with the arthritis foundation, like camp, and I get to go to benefits, and my picture was on the poster advertising for the arthritis camp, and that was cool.

I'm 11, and Im a size 6x… so Im pretty small, but my medicine makes my face chubby, I look like a chipmunk storing nuts in my cheeks for winter.  I have to take a lot of medicine every day.

What was your longest hospitalization?

My longest hospitalization has been 3 days, this June. And now I come back once a month for one night so that I can get IVIG, which is an IV medicine.  In March I was coming to the hospital all of the time for Xrays, MRI tests, CT scan, echos of my heart… lots and lots of tests!!

What is your favorite thing about or service offered at Phoenix Children's?

Everybody is really nice and they have really good chicken fajitas.  They also have an unlimited supply of goldfish.  They also always make sure I am ok.  They help explain things to me, like where they're going to take me and what they're going to do.

I also like the crafts that I can do when I am staying here.  The game room is fun, and I always get two decks of cards to borrow in my room to play cards with my mom.

What is the most difficult aspect of being hospitalized or your treatment?

The pain with the IV and the medicine is the worst part.  I miss my bed at night too.

Has it affected your day-to-day life?

My life is affected because I miss lots of school, and I miss out on a lot of projects by being absent.  I have missed birthday parties and field trips because I was in the hospital or wasn't well enough to go.

Is there someone, or an aspect of your hospitalization that really stands out in your mind that would help others understand the importance of Phoenix Children's:

Even though its not good to be sick and have to be here, they make you feel comfortable.  They are positive and caring, and very nice. 

It's better to be in a place that is only for children because everything is designed for kids like the tvs in the waiting rooms, and all the magazines, and the paint on the walls, the art hanging all over, the library and the food, and all of the doctors and nurses are dressed in cartoons, and are very playful and it makes me happy.

Is there something that your illness has changed your philosophy of life or how you look at things?

My faith is stronger, and I know that the struggles I go through,  God is going to be there to make sure I get through them.

Do you listen to KMLE Country 108?

Yes.  My favorite country song is Our Song by Taylor Swift.