Elana McEwen cannot just get up and go like many children her age.
McEwen, 11, has to make time for breathing treatments before she does anything else.
She has primary ciliary dyskinesia, a rare and incurable genetic disorder. PCD, as it is also called, is an inherited disorder.
"It's the little hairs, the cilia, that line your nose, throat and lungs. In healthy individuals, they beat back and forth to get rid of the mucus and debris. With PCD patients, the cilia does not move back and forth, so all the mucus and bacteria build up in her sinuses, in her ears and in her lungs, and this causes constant infections," said Karen McEwen, Elana's mother.
According to the PCD Foundation, only 400 people in the US have been diagnosed with primary ciliary dyskinesia, but Karen said PCD is very difficult to diagnose and the number of people living with the disorder could be much higher.
In fact, on the PCD Foundation website it says "In PCD, delayed or missed diagnosis means that more than 25,000 people are on a fast track to severe lung disease." Meaning about 25,000 are living with the disorder, but don't realize it.
Elana suffers with chronic infections in her sinuses, ears and lungs. To help prevent those infections, she does daily breathing treatments in the morning and night to keep her airway clear.
But that's not all.
"She does nasal washes to help get it out of her nose. She has ear tubes that she will need the rest of her life, to help the fluid drain out of her ears," said Karen McEwen. "She will need a bronchoscopy every year to help clean the thick mucus out of her lungs."
"I had 31 surgeries. I had a hole in my throat when I was little and then I have ear tubes to help me hear better," said Elana McEwen.
Elana and her family put together a video that she shares with her school each year as a way to teach her class about her disorder.
"I'd tell them that it makes it hard to breathe and even though I have PCD, I can still do what the other kids can do," said Elana.
Elana will eventually need a hearing aid, and some patients with PCD could require a lung transplant.27756500
According to the PCD Foundation, it's difficult to say what the life expectancy is for a person with PCD, but most papers say it is near normal.
"There's many challenges. We do always tell Elana, we encourage her to do everything that the other kids do," said Karen McEwen.
Swimming is one of her biggest challenges. After being in the water, Elana must put special drops in her ears to combat infection.
Elana's mother said her daughter is an advocate for PCD and for others in need.
"I like helping people because it's fun to collect the stuff and give it knowing I am helping other people," said Elana McEwen.
In fact, she did her first donation drive in second grade.
"She collected over 200 pairs of pajamas for the homeless and we gave those to the Oakland County Lighthouse in Pontiac," said Karen.
In fourth grade she did a blanket drive for cancer patients at the hospital.
She has also donated her hair twice. The first time she was motivated to donate her hair because of her experiences of seeing others sick while she was at the hospital and Emergency Room.
"One day she was like, 'You know what? I think I'm going to donate it, because if I had cancer and I didn't have any hair I would like someone to donate my hair,'" said Karen.
The second time she cut her hair, it was for a friend.
"I donated my hair because my friend Gavin had cancer," said Elana.
"She just has a strong drive to help other people," said Karen. "It's wonderful. I'm very very proud of her."
She is also very involved in raising awareness for her own disorder, holding garage sales and lemonade stands, donating money to the PCD Foundation.
"I always call her PCD warrior," said Karen.
"For Elana to be involved, it's really important," said Karen. "When you have a rare disease, you don't have the support, you don't have the numbers of patients, which therefore you have a huge lack of funding."
Even in play, Elana's caring nature is evident. The family's guest room is now her "doctor's office" where she cares for her "patients."
"I really want to be a doctor when I grow up because I have a lot of experience," said Elana. She would also like to be a physical therapist or a nurse.
Elana won a Kohls Cares scholarship earlier this year for her work to help others.
Her work is far from over.
The McEwen family is holding its first Spooktacular Trick of Treat walk for the PCD Foundation on Sunday, October 12th at 10 a.m. Beverly Park, 18801 Beverly Road, Beverly Hills, MI
The event is free, but donations are welcome. Children can wear their Halloween costumes and bring a trick or treat bag. The walk will have 25 trick or treat stations.
For more information on PCD, click here.
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