Like many kids during the summer of their 14th year, Kaleigh is a little nervous but looking forward to going to high school.

But while she’s looking forward to making new friends and experiencing new things, Kaleigh’s anticipation is also tinged with the hope that she can stay well.

Kaleigh has Sickle Cell Disease and has been receiving treatment at the Children’s Hospital of Georgia since she was 6 weeks old.

Sickle Cell Disease is inherited and causes normally round blood cells to become sticky and sickle-shaped, like crescent moons. These abnormal cells can build up and block blood flow throughout the body, reducing the oxygen blood cells carry. When this happens, it causes a lot of pain, swelling and infections.

“Now that she’s older it’s her limbs – it’s her arms, it’s her legs, it’s her back. She will get headaches, she’ll have stomach aches, which are usually initial signs she’s going into crisis. And now that she’s older it will be her fingertips and her toes,” said her mom, Dawn Jones.

Dawn has spent a great deal of time over the years researching her daughter’s condition to try to be the best advocate for her and help as best as she can to ensure things go as smoothly as possible when care is needed.

The past couple of years have been especially difficult, Kaleigh has had to endure several hospital stays, including one 21-day stint – her longest stay yet. She’s also had to have five blood transfusions, which increases her red blood cell count and helps her blood carry much needed oxygen throughout her body.

Kaleigh, who has a bubbly, friendly personality, said being in the hospital is hard for her because she gets lonely and misses her friends when she has to miss school.

However, the Child Life team at the Children’s Hospital of Georgia helps her through her these times by keeping her spirits upbeat and positive.

“They definitely help you get through it with the bubbles, and the drawings, making bracelets – it helped a lot.”

The Child Life team gave Kaleigh a bracelet kit during one of her stays, and the teen found she loves making them. She now makes bracelets for family, friends and her favorite nurses at the Children’s Hospital.

To others dealing with the same condition, Kaleigh says call your friends and find things that make you happy to take your mind off of the pain.