History teacher Jesse Hood watches his daughter’s bright red hair swish behind her as she skips down the street in Disney World’s Magic Kingdom. Four-year-old Lydia Hood’s mesmerized eyes go from ride to ride. Her gaze lands on the swings that raise passengers high into the air and gently whirls them around. She points excitedly and says she wants to ride it.

“I don’t, Lydia,” Jesse says jokingly. “That goes up really high. I might be too scared to ride it.”

But Lydia is persistent. Nothing her dad says can scare her out of riding the swings.

“She was so fearless the entire time,” Jesse said. “They weren’t the big, scary rides. They were the little kid ones, but even when I tried to act scared with her, she never showed any fear.”

At the end of the night, characters from the park come in and tuck Lydia and her 2-year-old sister Kiera into bed and sing them songs. The family is staying at “Give Kids the World” park, which was made for ill children who win trips through the Make-A-Wish Foundation. Soon the girls are fast asleep.

But Lydia’s life hasn’t always been a fairy tale.

***

The process had almost become routine. She skips into the hospital with, as always, a mess of bright red hair swishing behind her. She chats with the front desk lady for a minute and then Lydia and her family get taken back. Lydia gets into one of the chairs and prepares. Other kids are here too, receiving their treatments. Most of them have already lost their hair.

Although she’s done this enough and knows what’s coming, it never gets easier.

“Daddy, I don’t want to get poked,” she says.

He assures her that he’ll be right there and everything will be fine, just like it always is.

The nurses come in and place the needle into the port in her chest inserted to make the chemotherapy easier to administer. She shuts her eyes tightly and holds her dad’s hand as the discomfort comes and then passes.

Once the treatment is over, she’s back to being a curious and rambunctious little girl. She takes the pole that holds her medicine and drags it across the tile floor to the craft table. She could spend hours there, drawing and making all kinds of different colorful creations for anyone and everyone. There are activities for all the kids. Crafts, video games and more. Anything to keep them entertained. They’ll be there all day – six to eight hours once a month.

But Lydia doesn’t know any different. This is something she has lived with almost her whole life. It all started when she was 9 months old, and her parents took her to the pediatrician for her annual check-up. The doctor found several spots on her leg and decided to run some tests.

The family later found that Lydia had Type One Neurofibromatosis, a disease that affects child development. The coding that the brain uses to make the parts of the body had been damaged, which causes tumors. Lydia’s tumors grew on her optic nerve, right behind her eyes. The doctor told them that chemotherapy would be the only option to slow the growth of the tumors. Without the treatment, she would go blind.

“It was a no brainer for her to do chemotherapy,” Jesse said. “The low dosage chemotherapy was better because it’s better on her body, and she gets to keep her hair. I probably get a comment every other day about her red hair.”

After the diagnosis, Jesse had a hard time dealing with the situation being so out of his hands.

“I’m a control freak and there was absolutely no control to be had here,” Jesse said. “I asked the doctor what I could do to keep myself busy and she told me to start fundraising.”

Around the time that Lydia was diagnosed, major budget cuts were made to research funding. The money that was used for a majority of the research for Neurofibromatosis was gone. This encouraged Jesse to go out and pick up some of the slack. The doctor connected Jesse with the Children’s Tumor Foundation.

He got back into running shape and has ran several 5Ks and half marathons in the Children Tumor Foundation’s name. When he mentioned to his classes why he would be missing school occasionally, people started to take an interest in Lydia’s story.  Around school, students don the shirts labeled “Lydia’s Fight Night” which were endorsed and promoted by the girls’ varsity volleyball team for two years in a row. Palio’s Pizza in Flower Mound also hosted a night where a percentage of the proceeds went to research. Palio’s told Jesse that it was their busiest night of 2012. In 2012 alone, Jesse raised more than his annual salary in fundraising.

“The most amazing part of all of this is so many people are so supportive and are concerned and want to know about her,” Jesse said. “We’re so humbled by our 4-year-old little girl who has given us the opportunity to connect with the community.”

Some time after the chemotherapy began, the Hoods received some wonderful news. A social worker asked if they would like to fill out a Make-A-Wish application. This foundation grants wishes to children with life-threatening medical conditions. Two weeks later, the Hoods got the call. They had won a trip to anywhere in the world that they wanted to go. Jesse and Dawn excitedly told Lydia the news that they were going to Disney World.

To reinforce the excitement, Jesse and Dawn bought her Disney posters with princesses and Mickey and Minnie. They also bought her stuffed animals, and they watched Disney movies. With 40 days left until the trip, Jesse brought home a big desk calendar. Every day Lydia would draw an X to mark the days until their leaving date.

A care package arrived in the mail a few days before they left for their weeklong spring break trip. Books and videos laid out their whole visit. Everything was scheduled, booked and paid for. Make-A-Wish had even supplied them with spending money. All the Hood family had to do was fly to Orlando to have a great time.

***

            The Hood family leaves their room in “Give Kids the World” park and walk out into the village.  The park gives kids a place outside of their illnesses and hospitals where they can remember to just be kids again.

Today, dark grey skies and a light rain sprinkle down on them. The park, which can hold 250 families, is completely full this week. The children in the park look in various stages of health. Some look like Lydia, with all of their hair, and others have no hair or are in wheelchairs.

“It was kind of bittersweet,” Jesse said. “But it’s our life. We see a lot of really sick kids and we’ve gotten used to it.”

Walking through the park, Lydia and Keira stop near one of the princesses. Lydia stands gazing at the beautifully ornate, gold gown worn by Belle. Lydia would rather see the princess Ariel, who is actually Lydia’s favorite princess. But she wants to make sure her sister Kiera is able to see her favorite as well. Jesse thinks that her small gifts of generosity are some of the most important things that she is getting out of her disorder.

“She sees how other people give and do so much for her,” Jesse said. “And I really believe that it’s going right down into her soul.”