Home » Front » Sisters unite to save youth’s life — Rare disease strikes physically active teens

 

 

By Dwight Hobbes

Contributing Writer

We know the expression “heart and soul.” You can even look up definitions, one of which reads, “the entirety of one’s energies or affections.” In that spirit, Minneapolis sisters Christina Paylor and Carmen Means are drawing on soul-deep commitments to family to help the ailing heart of 13-year-old Amazin Crudup, Paylor’s daughter and Means’ niece.

Amazin has hypertrophic cardiomyopathy, which damages the muscle wall of the lower chambers of the heart and is a leading cause of sudden cardiac death in especially active adolescents. After getting up in the morning, getting dressed takes about all the strength she can manage before needing to rest.

Routine teenage activities like frequenting the shopping mall, carousing downtown on a Friday night, even simply going to school are out of the question. At press deadline, Amazin had weakened enough to have been admitted to University of Minnesota Amplatt Children’s Hospital since March 18.

Amazin

Amazin

A disturbing dilemma is that Amazin’s care is caught up in red tape, leaving her yo-yoing, as it were, on and off the waiting list to receive a heart transplant. “Her position,” Paylor  says, “is complicated. She keeps getting taken off the list. There’s criteria you have to meet. She has to be on certain medication, which is nitroglycerin, [and] has to have complications in other parts of her anatomy, which she doesn’t have. If you look at her, she looks perfectly fine. You wouldn’t know she’s sick.”

You can’t tell someone has cancer by looking at them, either. It doesn’t make them any less gravely ill. “There are other people who need transplants, Paylor continues, “which is understandable — [people who] can’t do anything versus what she can do. They tried to put her on the nitroglycerin, but it didn’t [stop her heart’s leaking]. So, they took her off it and started a new medication. We’re playing a waiting game.”

Hypertrophic cardiomyopathy is neither playing nor waiting. As Paylor spoke, she had no way of knowing when Amazin could return home and continue awaiting a transplant there.

“Her doctor goes to the [transplant review board] every two weeks to fight to keep her on the list. And every two weeks, at the end of the week, she is taken off. [We’re] trying to keep her on so she can go ahead and get the surgery.”

Meanwhile, medical attention costs money above insurance coverage when all is said and done. Pursuant to which, Means stepped in with an idea of a benefit for Amazin, then pulled in “people who have the expertise that I do not in terms of organizing, fundraising, networking.”

Among them are Chanda Joyner of Wells Fargo; Leandra Williams of TreeHouse, which is donating space for the event; and Andrea Childress of the Metropolitan Council. Means clarifies, “Not those organizations, but the individuals,” individuals via whom said organizations nonetheless connect to the community.

Point being, Means rolled up her sleeves and drafted heavyweights to be in Amazin’s corner. Means herself is a personage of considerable consequence who has the resource of pastoring the Movement Church in South Minneapolis. “There’s a lot of work to be done,” Means points out.

Paylor adds that, through all this, Amazin is holding her head up. “The medicine she’s on makes her sleepy, so she’s tired a lot. But, she’s always in good spirits. She’s taking it as a champ, actually.

“She has such resilience. It’s testimony. I believe what’s kept her alive this far is her being [herself]. She’s never negative. She does have her moments, but I’ve never heard her say, ‘Why me?’” says Paylor.

“Most of the time she’s laughing, making jokes,” Means continues. “She knows this could be fatal. [She has] faith. We just believe in God.”

Indeed, the youngster lives up to her name, considering what life was like before the disease attacked. Amazin was an accomplished dancer with strong aspirations to become a choreographer.

“That’s what she was on her way to do,” Means explains. “She danced from the age of four. [It] was her life. She was at a big competition in Virginia [during adolescence] and just kind of passed out.”

As well as aiding her niece, Means points out that the benefit is meant to increase awareness of heart disease, specifically how it strikes even the young. In the cruelest of ironies, hypertrophic cardiomyopathy tends to lay dormant and be brought on by the very thing that characterizes teens — an energetic lifestyle such as athletics or, in this instance, dance.

“It’s important,” Means emphasizes, “to have your child get physical checkups and to get checkups yourself.”

 

Tickets for the Amazin’s Heart Benefit are available at www.amazinsheart.eventbrite.com or at the event, April 27 at TreeHouse, 7520 Brunswick Ave. North in Brooklyn Park for $50. 

Dwight Hobbes welcomes reader responses to P.O. Box 50357, Mpls., 55403.

 

 

 

 

One Response to “Sisters unite to save youth’s life — Rare disease strikes physically active teens”

  1. Meghan Coleman April 9, 2013

    Amazin is such a blessing. She has so much personality. Even as a small child, she had so much personality that she would literally throw a fit if you tried to make her do anything she did not feel like doing. I knew from an early age that this child would never let anything stop her. She truly lives up to her name.

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