Families facing illness find support via Internet

The emotional, physical, financial and often isolating toll of caring for children facing overwhelming medical challenges can be staggering.

Yet for three local families and many of the 54 million Americans who help care for ailing or recovering family members of all ages, help often is just a click away.

While rewarding, experts caution caregiving requires tremendous emotional, physical and spiritual stamina. Digital technology, families say, can help ease the caregiving burden, establish a sense of connectedness, provide resources, offer solutions and span the growing gap between caregiving and life outside the hospital.

Vlogs, blogs and social media

Christina Payton of West Chicago knows the challenge well. Her 9-year-old son, Owen, was born with multiple congenital heart defects and last May received a lifesaving heart transplant at Lurie Children's Hospital, Chicago.

“It's been a journey,” says Payton, who together with her husband, Chris, initially started an online CarePages account upon learning of their son's cardiac challenges after a prenatal ultrasound exam 8½ years ago.

“It was a great way to let friends and family know what was happening, share status updates, photos and even our feelings,” states Payton, who soon after began volunteering with the Mended Little Hearts organization and eventually led chapter meetings at Central DuPage Hospital, Winfield.

More than 700 visitors logged into Owen's CarePage, BabyOwenPayton, regularly to learn of his early premature arrival, the severity of his multiple heart defects, his three open-heart surgeries before he turned 4, his need for a feeding tube for 16 months, a complication in 2010 that resulted in protein losing enteropathy (PLE), which led to the eventual March 2012 heart transplant listing.

As the family grew to include siblings, Juliet, now age 6, and Tredway, 2, Owen's medical needs also escalated. Payton says she spent more time caring for those needs and was unable to attend support group meetings and spend time unwinding with other parents of children with heart defects.

No strangers to the Internet and digital media, the Paytons turned to the information super highway for information, resources and emotional support. They soon discovered a Yahoo listserve site with the names of a few other families who had a child with PLE.

“Not surprising, we already knew most of these people since it's really a very small number,” states Payton. “We also started a special Facebook page, ‘Have A Heart 4 Owen,' to help keep his many Benjamin District 25 and Evergreen Elementary School friends, their families, neighbors and our extended family up to date on all things Owen prior to his transplant.” To date, more than 2,700 have liked Owen's page to receive periodic updates and countless others view the site routinely.

At a special 2012 daylong transplant evaluation meeting at the former Children's Memorial Hospital, now Lurie Children's Hospital, the Paytons learned from the hospital's financial counselor about the Children's Organ Transplant Association (COTA) and their extensive website support for fundraising assistance and family support.

“Coordinated by a volunteer group of amazing friends, COTA allowed them to fundraise for transplant-related expenses,” explains Payton who says the massive campaign included innovative on-site fundraisers such as bowling, selling T-shirts, individual donations and gifts.

A special online COTA blog, cotaforowenp.com, enabled the Payton family to share progress, feelings and to reach out for additional emotional support during the transplant process.

Yet another online community, LotsAHelpingHands, offered family friends and neighbors practical ways to provide day-to-day aid as Owen's parents juggled commitments between the hospital and their West Chicago home. Coordinated by a dear friend and current Benjamin-Evergreen PTA president, the website offered opportunities for friends to deliver home-cooked meals, provide transportation and tap into other unmet family needs.

“The day we learned a heart had been found for Owen after two years of waiting seemed unreal,” recalls Payton who recalls picking her son up at school, waving farewell to his second-grade class and heading to the hospital.

“I shared our excitement on Facebook while en route to the hospital, and throughout the coming days posted and enjoyed reading online of all the prayers and support. That same feeling of connectedness exists today, eight months later.”

Payton says she and her family were especially excited to see photos of all the Evergreen School staff and students gathered on the playground in red shirts and sharing a giant “O” sign in support of Owen as he received his new heart.

Payton says the family is still getting used to Owen's new post-transplant challenges and is both grateful and inspired by the generosity of his donor's family. Now in the third grade, Owen was excited to return to school with his friends this past fall.

Long-term support

Another area mom, Kim Winters, says two especially valuable online resources have helped her family cope with daughter Elena's ongoing blood pressure, stroke and kidney challenges.

Elena has MOP2, an extremely rare form of dwarfism associated with significant health challenges, significantly small stature and a shortened life span. As a teen/young adult, Elena is the size of a 3-year-old. At age 9, she survived an aneurysm rupture. She learned to walk and talk again, but is living with multiple aneurysms and moyamoya, a progressive blood vessel disease of the brain. Thriving in social settings, Elena dreams of becoming a motivational speaker and uses her service dog, Sonny, to assist in various day-to-day tasks. In December 2012, Elena learned she needs a kidney transplant and was placed on the kidney waiting in early 2013.

Now requiring dialysis three times a week while waiting for a kidney transplant, Winters says the Facebook groups “Shut Up About Your Perfect Kid” and “The Caregiver Space” have been especially helpful during Elena's journey from childhood challenges to today's teen/young adult health care needs.

“When it comes to their forums, all I can say is wow,” notes Winters. “Finally, someone who gets it!” Founded in 2012, the Facebook Caregiver Space is a social network offering a safe haven for families and caregivers, featuring 24/7 member access, public blogs, private journaling capabilities and interactive chat.

As a way to update friends and family, Winters initially started an online Caring Bridge social media page years ago after learning of the page from a friend.

“At the time, I didn't realize how much of a support the site's journal and story sections would be for me over the years,” states Winters, who adds she has since noticed that a number of hospitals now have links to it or a similar website on their webpage.

“Even years later, I'm discovering resources I wish I had learned about way back when. I've been so touched by the many people who have found us and stayed connected.”

Knowing there are people out there sending good vibes, well wishes and prayers makes a huge difference according to Winters, who together with her husband, Phil, spend their days juggling work and frequent commutes for Elena's medical appointments and dialysis. “Just knowing people are there and all I need to do is say the word and they will be there, is huge!”

Help a click away

With family spread from Thailand to Poland to California and across the United States, Jolanta Sinagra of Addison says social media makes it possible for her family to stay close.

The mother of three children — including 19-year-old twins who both use wheelchairs due to cerebral palsy — says Facebook and Instagram are a valuable link to the outside world.

“We simply can't travel as we'd like due to Olivia's and Anthony's health needs, their extensive equipment and logistics,” says Sinagra. “It's really hard to get around.”

Like many typical teens, Sinagra says her daughter, Olivia, especially loves sharing photos and videos of her service dog, Hawk, an adorable golden doodle who helps guide her wheelchair, open doors and retrieve dropped items, with family members near and far. Her mom says the emotional support of the Facebook page is vital to them both.

“During Olivia's recent shoulder surgeries, it was how I was able to keep everyone up-to-date and connected,” she says. “Distant family members were able to offer us comfort and support despite the miles. Social media is a vital link to the outside world.”