Our Every Day Health Hero: Claire

Orchid by Rene Mensen (CC BY 2.0)

Orchid by Rene Mensen (CC BY 2.0)

We have known Claire Wineland for about two years now, and we’ve have had so many great experiences with her that we thought we knew all about her. But when we sat down to watch episode 2 of Everyday Health: Claire’s Story on ABC, we found ourselves moved and mesmerized to the screen, and when the show was over, we felt we had to share this beautiful message that poured out of the screen. So, here are the highlights:

Claire was diagnosed with Cystic Fibrosis, a genetic disease when she was 7 weeks old. When she was born, 14 years ago the statistics for expected life span with Cystic Fibrosis was about 10 years. Since then, medicine came so far that the median life span is now in the 30’s and even 40’s. Claire believes a cure will be found during her lifetime.

In early 2009 Claire went into the Hospital for a simple procedure that she had done before. There were no complications during the surgery, but she came out of the procedure not herself, and within 24 hours after that her lungs failed, she was in a coma for 16 days. She had a 1% chance of survival and she miraculously came out if it

Hundreds of people came out to support the family, and they created a webpage to keep everyone updated. After Claire came out of the coma they kept the page going. Soon enough she had over 4,000 people following her page. Clare was inspired by the amazing support she received and by the reports from people who were affected and helped by her story, and she imagined what great good can come out of this, which led to the creation of Claire’s Place Foundation.

Everyday health heroes arranged for a second go of the Clare’s Place Foundation first event, a flash mob at the Santa Monica Place mall.

 

Chelsie Hightower was one of the celebrities involved and was very moved by Claire:

“Claire is adorable. She’s 14 but she acts like she’s 25. You can tell that she’s a fighter and she’s really strong. She’s an amazing young girl. Most people with CF get winded easily and they’re not able to do a whole lot of physical activity, so it is so amazing that Claire is out here, and he’s doing this for a better cause, and dancing as much as she is. The fact that she’s putting so much work into helping other people is so inspirational”

Claire’s mother, Melissa shared some of the challenges like the fact that Claire spends an average of five months out of the year in the hospital. The CF exacerbates her lungs, they get filled with mucus, she’ll contract a virus which can turn into a disease, like a pneumonia, which is why her life has been a series of illnesses and hospitalizations. Even with all this, Claire is very positive about her disease, it’s just the way she is.

“The parent usually tries to influence the children and have them stay positive, but in this particular area, she’s given to me: It’s a great opportunity. It’s a great burden, but there have been so many gifts, and she wants to share that with other children. You meet a lot of other families in the hospital with children who have CF and they’re very sad and depressed and it affects your health… but her attitude and her gratitude on a deep level for her life ,exactly how it is, helps her overcome a lot.”

Claire takes about 30-60 pills a day, two insulin shots, growth hormone, 5-6 kinds of breathing treatments to open the lungs and the oxygen tank and tube which she’s allowed to take off for 15 minutes at a time but then she get exacerbated. Claire also has stuff to sleep with, which applies positive pressure to keep her lungs open when she breathes and an extra feeding tube when she sleeps because she burns a lot of calories and can’t be constantly eating.

Claire is in every other way a normal 14 year old girl living in California. She’s recently been taken out of public school and does homeschooling, so to keep the interaction with other teenagers she has activities with small groups in her area and she is currently involved with the play “South Pacific”.

“I do not feel like I’m battling CF, I don’t feel like it’s fighting me, because that would be saying that if I got rid of it somehow my life would be so much better, but it wouldn’t, I would have something else to overcome, something else to face… I would never erase CF, I’ve learned so much from it, grown so much, became who I am from it, but if there is a way to cure it in the future, then that’s what I want, to be able to live more from this moment on”.

Claire has a lifelong relationship with the doctors and nurses at Long Beach Memorial Hospital, and it was quite visible in the interview with Dr. Inderpal Randhawa M.D., with Claire sitting by his side:

“It’s like any chronic condition, I tell folks, CF is 75% in the mind, and she’s got a great mind, great personality and she’s rolled over this thing, and that’s the reason why despite having a pretty difficult type of CF that she has, she’s done well, and we’re going to keep pushing her as best we can”

We recommend wholeheartedly to watch the entire episode about Claire Wineland, offered is small clips on Everydathealth.com. We’ll leave you with Claire life philosophy:

“My life philosophy is to enjoy everything you do, and if you don’t enjoy what you’re doing at least you know that the outcome of this is going to be joyous. I think a key part of being able to live with an illness or being able to live with a “problem” is to be able to see it as a joyous experience, because it is, everything we’re given is a joyous experience, it equals out… I think so far I’ve lived a great life and whatever comes next, comes next, but as long as I am happy doing it, and I don’t feel like it’s something I am being forced to do, then I feel like I’m good with it”.

Follow Claire’s daily life on facebook, ‘Like’ the Claire Place Foundation’s page and support the Claire’s Place Foundation in supporting many other families living with CF.