Parents get sense of control over the uncontrollable by taking up 'awareness' efforts

abredeson@islandpacket.comJuly 8, 2013 

Kathleen Mayers poses on May 23 with her kids, from left, Honora, 7, Emma, 12, and Caroline, 9.

JAY KARR — Staff photo Buy Photo

There seems to be an overabundance of "awareness" efforts out there. You see it on Facebook. On Twitter. You see it in the newspaper, on TV and in your mailbox. "Help us raise money for this." "Come walk with us to raise awareness of that."

Before my daughter was diagnosed with two life-threatening diseases, I don't think I paid much attention to all the different days and months set aside for "awareness." Now that my life revolves around tuberous sclerosis complex and polycystic kidney disease, I feel it's my job to do whatever I can to, well, raise awareness. If educating people about these diseases means getting us one step closer to cures, just try to get me to shut up about TSC and PKD. After all, I cannot just sit back and do nothing while my 7-year-old has seizures and progresses slowly toward kidney failure.

Educating others about a condition can give parents an opportunity to make a difference in their children's lives. It can bring funding for cures, erase stigmas and ultimately improve lives.

But raising awareness also has its risks. It takes time and sometimes money, adding to the stress of having a special-needs child. It puts you out of your comfort zone -- it can be difficult to ask people for money over and over again. And when you put your child's information out there for the whole world to see, you're opening up yourself and your child to criticism.

There's also the fact that some people will discriminate against you if they know you have certain conditions. That could limit your opportunies in life and cost you a job in the future. And lastly, people want to be treated with respect, not pity -- something that can be hard to get when everyone knows what you're going through.

So, why do people raise awareness of all these different issues? Is it because they have nothing better to do? On the contrary, it's often people who are overwhelmed caring for loved ones but manage to squeeze in enough time to send off one more email or ask for one more donation. It's often parents who are caring for sick children, parents who have to balance work and school activities with ordering medications, scheduling appointments and fighting with insurance companies.

On top of all those responsibilities, why do parents go out of their way to raise awareness? Well, if you can't make your child's disease go away, you feel pretty powerless. Raising awareness can help restore some of that power, according to Kari Luther Rosbeck, president and CEO of the Tuberous Sclerosis Alliance.

"I think it's empowering to raise awareness," Rosbeck said. "I certainly see that when people march on Capitol Hill. It's really a way for them to have some control over this disease, to really advocate on their child's behalf."

Hilton Head Island mom Kathleen Mayers raises awareness about Down syndrome because her 9-year-old daughter, Caroline, has the condition. She wants the public to know that people with Down syndrome are not so different from anyone else.

Mayers started raising awareness about her daughter's condition just a few weeks after Caroline's birth. After a medical professional told her there was no way to predict how "retarded" her baby would be, Mayers knew she had to do something to change the way people look at individuals with Down syndrome. She didn't want another mother to hear those harsh words with no one there to tell her the truth: that a Down syndrome child can lead a happy, productive life and bring a lot of joy to the world.

"It was pretty devastating to me," she said. "I knew right away I had to do something. ... I knew that it was important to me to give that back to somebody else."

In 2005 Mayers and her husband, Mick, started a nonprofit organization called Caroline & Friends, which works to educate the public about Down syndrome and help individuals who have the condition. They launched a website and a Facebook page for the organization. They have done TV and radio interviews to promote the group. And the local hospitals pass out their contact information to new parents of babies with Down syndrome.

The couple also hosts a "Buddy Walk" every fall on Hilton Head to educate the public about Down syndrome and to raise money. A portion of the funds go to the National Down Syndrome Society, but most of it helps local people suffering from the condition.

But you don't have to start a nonprofit group or host a walk to make a difference. Jenna Barker of Bluffton passes out business cards to people who are curious about her daughter's rare skin condition.

Annabelle, 4, has epidermolytic hyperkeratosis, a form of the genetic disorder ichthyosis. The condition causes thick, itchy, scaly skin. It is incurable. When Annabelle was born and the nurses wiped her off, she bled. She must take several baths a day and have lotion applied sometimes every 30 minutes. Her mother carries a first aid kit with her everywhere she goes because Annabelle's skin is so fragile. She also has a very high risk of infection.

Barker said her little girl is starting to notice people whispering about her in public. She said Annabelle came home from school the other day and said someone told her they didn't like her skin.

Another simple way Barker raises awareness is by wearing blue ribbon pins for Ichthyosis Awareness Month in May. She said that brought a lot of questions.

"I know people are curious, and I'd rather them be curious in a nice way than sit there and whisper," she said.

Mayers said Caroline and others with Down syndrome have limitations, but we all have limitations.

"Don't look at her and think what she can't do," Mayers said. "Look at her and think about all the things she can do."

REACHING OUT

Since Annabelle's condition is so rare, her mother does not have the support of other people going through the same thing. She did find a website for ichthyosis but not for the particular kind her daughter has.

Many parents of special-needs children go to the Internet for support. There are countless communities online to help parents cope with the special issues they face having sick children.

Jill Lutz has found a great deal of support online in dealing with her daughter's disease. Brea was diagnosed at birth with a form of dwarfism called achondroplasia.

"I was absolutely terrified of what that would mean for her," Lutz said. "You have all these dreams and aspirations of what your child was going to be like and having had no knowledge of this prenatally, I just felt like the wind got knocked out of me because I didn't know what this was going to mean for her. I think I had a lot of worst-case scenario ideas in my head of how she would be treated differently and how she would have challenges."

Lutz said her first source of comfort was her pastor, who came and prayed with her at the hospital.

"God knows exactly what he does when he gives special babies to people," she said. "And I knew by the time I left the hospital, which was just 48 hours later, I was on a mission to learn everything that I could. It was kind of like, 'Put on your big girl panties and deal with it.' It was just like, 'This is what God gave you, and you're going to deal with it the best you can.'"

Lutz said she felt sorry for herself and Brea for the first couple of days. Then she got busy learning everything she could about achondroplasia. She joined Little People of America within a week of Brea's birth. She joined a group called Parents of Little People. She joined groups online. And she said that support helped her accept her daughter's condition.

Since then, Lutz has been to several regional LPA events and has met others with achondroplasia. She has formed relationships with many people on Facebook.

She said it's important to build relationships with families going through the same struggles.

"It's as important for me to learn from other families as it is for her to build relationships with other kids who can really share her experience," she said.

Brea is now 4 years old but wears size 18-24 months in pants and 3T in shirts. She is 31 inches tall and 29 pounds. Her torso is average, her arms and legs are short, and her head is large. She is expected to reach between 3 feet 8 inches tall and 4 feet tall.

Lutz has attended regional Little People of America events and plans to go to her first national convention in June in Washington, D.C. Brea has even been featured on the cover of "LPA Today," the official magazine of Little People of America.

Lutz said she was recently put in touch with a local woman who found out her baby will be born with achondroplasia. She's looking forward to being there for the woman the way others were there for her.

"Kind of neat the metamorphosis of the whole thing -- that I'm actually in a position where I can be somebody to help others instead of being the person that needs all the help," she said.

AWARENESS OVERLOAD

I did an informal poll on Facebook and found that most of those who responded said they are not bothered by parents raising awareness. Many are interested in keeping up with their friends' sick children so they can offer support. One friend said she sometimes feels overwhelmed by all the sickness and not being able to help everyone. But she said she's glad to be in the know so she can at least pray for people.

Even though it sometimes seems like there's something to be "aware of" just about every day, know that there is a personal story and mission behind every request -- it is a way for parents to taken action against something they have little control over. No one expects people to donate to every cause or participate in every awareness day that pops up on your newsfeed or in your mailboxes. Most times, just understanding the personal story behind the cause is enough.

Parents of children with special needs are doing what they can to make a difference for the ones they love. Personally, I know that if I can't cure my daughter of her diseases, the least I can do is raise awareness and money so someone else can.

Follow Amy Coyne Bredeson at twitter.com/IPBG_Amy.

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