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Local mom starts support group for childhood alopecia

Ray Harrell-webBy SHANNON WATKINS

shannon@southwesttimes.com

 

“We’ve always told Ray that God’s got a purpose for it, and a reason, and we’ve always just kept the faith of God in him, that ‘one day you’ll see He’s got a reason for it,’” said Paula Bowman Harding.

Harding, who works at the Radford arsenal, spoke of her son, Ray Harrell, 13, a student at Dublin Middle School. Ray suffers from alopecia, or baldness, which started as alopecia areata, in which he lost quarter-sized patches of hair; it progressed to alopecia totalis, which means his entire head was devoid of hair.

Most people with totalis lose even their eyebrows and eyelashes, but Harding notes that Ray’s grew back. Some can even develop alopecia universalis, which means they lose all hair on every part of their body.

“He was three years old,” says Harding of the onset. “As soon as we started noticing the spots, we took Ray [to the doctor], and he was diagnosed then with alopecia areata. Then they suggested that we go to a dermatologist. And we did, and at that time, even now, there’s just no cure for it, so there was nothing we could do.”

She continues, “When I first took Ray to the doctor, it’s all kinds of things that can affect it. It could be in the genes. We don’t have it running in our genes that I know of. I’ve heard that it could be an environmental issue. It could be something in the air. But as far as I know they have no cure for it, and really they don’t have a clue of exactly what causes it. It’s just something in the immune system that triggers that part of the hair follicle that will cause it to happen. And anywhere from 1 to 2 percent of the population in the United States have it.”

Alopecia is defined as an autoimmune disease; hair loss and wavy, pitted, brittle nails are its main symptoms. “It’s different for every person,” says Harding of the stages and severity of the disease. It is not fatal or even painful—unless you take into account the social toll it can take on its younger victims.

“I remember it started in preschool,” Harding recalls. “He came home one day and he was looking out the door, and my sister asked him, ‘Ray, what’s wrong? Is there something wrong?’ He’s like, ‘I’m just praying.’ She’s like, ‘Well, what are you praying about?’ He’s like, ‘I’m praying God will give me hair.’ And she’s like, ‘Well, why are you praying for that?’ and he’s like, ‘Well, because the kids at school sing a song.’ And she’s like, ‘What’s the song about?’ [sings] ‘Ray ain’t got no hair, he ain’t got no hair.’ Stuff like that.”

The bullying continued throughout Ray’s grade school years. “I remember in second grade, coming to eat lunch with him, and the older kids, like in fourth or fifth grade, would walk by, and they were smacking his hat off. He’s always dealt with things like that, but now that he’s gotten older, of course his skin’s gotten a lot thicker, he deals with a lot better,” Harding says.

“I remember third grade, because you know, you always get stares, and the first question that people will ask is, ‘Does he have cancer?’ Because nobody knows about alopecia. And that’s what was bad.” Harding would have to take time and explain, “‘No, it’s this autoimmune disease that causes your hair to fall out.’”

For a long time, Harding fell back on her religious faith to get her and her son through a trying time. “We just put our trust in God,” she says.  “God was our support the whole time. But that was OK.” There were no local support groups before, but Harding and Ray want to change that.

“Our goal is now to help out other kids that have alopecia. For instance, there’s two girls that live in Carroll County that’s the same age as Ray, that have it. One of the girls, she has universalis, she has no eyebrows or eyelashes,” says Harding. “So Ray and I decided, with this little girl’s mother, to start a support group, because, you know, girls, it’s harder on them. And Ray’s been real good, he’s a real humble child, he reaches out to kids that have other problems.”

Harding feels that a support group, however small, will be a big help to any area kids with alopecia. “Now, Ray’s not depressed, and he doesn’t have a low self-esteem, but there’s been times when he said, ‘I wish I had hair,’” she says. “But I know it’s worse on these girls. I guess that was just my thing, where the suicides are so bad where kids are being bullied for a variety of reasons. All we wanted to do is, as a community, as a church, reach out, raise awareness of how something as simple as not having an eyebrow, we’re judged on it and picked on.”

The religious institution is River of Life Pentecostal Church in Dublin, which Harding and Ray attend, and where the support group will have its first meeting.  “I just talked to Mike [Honaker, River of Life’s pastor] about doing one, but as far as the Church goes, they’ve been great,” she says.

“They don’t look at Ray any differently. I’m sure there’s probably some in the church wonders what it is, but we haven’t addressed it yet. There needs to be an awareness out there, and we want to reach out to other kids that have low self-esteem and help them out,” she said.

Harding restates her concern about how alopecia and the teasing and bullying it sometimes draws can lead kids to doubt their own worth. She has been especially worried for kids ever since hearing about a youth in Tennessee with alopecia who ended up committing suicide.

“We just want to do what we can to build their self-esteem and give them confidence, and let them know, you know, we’re here for them. God made them in His image, in his likeness,” Harding says.  “And our main goal, too, is to reach out to kids and tell them that men might judge your appearance on the outside, but God looks on the inside.”

“And I mean, you know, my thing is, we’ve always lived in a world where people are judged by their color, by their height, weight, and you know, it even comes down to something simple as hair,” she says. “That’s just the life we live in. And we not only want to reach out to kids with alopecia, we want to reach out to any of the kids that have low self-esteem. We want to bring that positive attitude and bring Christ into it. That’s the main goal, just to reach out to kids, and bring alopecia awareness.”

As for the alopecia awareness group, “Anybody can come out. All we’re doing is getting the kids to meet each other, and just talk. You know, how do we want to do this? What’s everybody’s goal? And go from there. Anybody that would like to help with the support group, that would be great.”

She also mentions a camp for kids with alopecia, which Ray is going to in August. The camp is part of the Children’s Alopecia Project, which is a nonprofit group dedicated to helping kids with alopecia.

Harding looks forward to having the kids meet up for the first time, but her feelings for children who are different remain as sensitive as ever. “Every time I go somewhere and I see kids with disability or special needs, my heart just breaks. And I want to be able to reach out to any of them.”

The first meeting of Harding’s alopecia support group will take place at the River of Life Pentecostal Church at 5311 Black Hollow Road in Dublin on July 13 at 6 p.m.

For more information about childhood alopecia or to make a donation, visit  HYPERLINK “http://www.childrensalopeciaproject.com” www.childrensalopeciaproject.com.

 

 

3 Responses to Local mom starts support group for childhood alopecia

  1. kellie fore

    July 1, 2013 at 1:14 pm

    Very touching story, I hope that Ray can go to school in peace now that it is published in the paper as to his illness. You know it should not have to be published in the paper, children can be so cruel in today’s times and it breaks my heart. I pray that Ray and any other child with a disability not be bullied anywhere. Good luck Ray God speed and I hope next year at DMS is a great year.

  2. Brenda Draper Smith

    July 1, 2013 at 8:33 pm

    It saddens me to know that people have picked on such an humble and loving boy such as Ray. I pray that this awareness will help students reach out to him and be an encourager rather than a bully. I hope this leads others to Jesus Christ because of his courage and faith. I will be lifting this group up in prayer and pray that next year will be Rays best year yet. Thanks Ray for reaching out to others in need of support.

  3. CC

    July 2, 2013 at 9:52 am

    What a terrific mother this young man has. Self esteem comes from doing esteemable things, and his mother knows that. She is teaching him that what we look like has nothing to do with God’s plan for us. Although he is a very handsome young man, I’m sure he knows it is what’s inside that counts.