Her daughter’s rare illness inspired this mother to create an organization that helps privately connect people living with unique health conditions.
For parents of children with rare or chronic illnesses, it can be scary watching their child struggle with life-altering conditions, never fully knowing what their future may hold.
In fact, the American Psychological Association notes that many parents lack the ability to cope with the new challenges presented by a child’s chronic illness, and depression and anxiety can result.
The medical battles and unanswered questions can be extremely isolating. Many parents find it difficult to talk to friends and family about what’s going on, knowing they can never fully understand themselves.
That isolation is something Makayla Allison of Colorado knows all too well.
Her 7-year-old daughter, Lily, was born with a rare genetic condition called Ehlers-Danlos syndrome. She was diagnosed just over a year ago.
Prior to diagnosis, Allison told Healthline, “We spent those years navigating dozens of symptoms and seemingly unrelated diagnoses without an encompassing explanation for what was going on with her little body.”
Allison and her husband would ask Lily’s doctors if they knew of other children experiencing similar symptoms, but even when they said yes, “They were unable to connect us due to privacy laws.”
Allison wasn’t comfortable posting Lily’s medical details on Facebook or online message boards in an effort to find others who might understand, though she says they desperately longed for that connection.
But when Lily was just 5 years old, she asked her parents to help her find a friend like her. That’s when Allison got an idea that would change not only the lives of her family but others as well.
“It was a game changer,” Allison said of her daughter’s request.
Allison began envisioning an organization that could help connect those with unique health conditions in a private way.
With a background in social work and marketing, she knew she would need additional professional support to make her vision a reality. She sought it out and development soon began on Some 1 Like You (S1LY), officially launched in March of 2017.
S1LY aims to privately connect both parents of children with chronic illnesses as well as adults looking to find someone like them who’s living with a rare or specific condition.
Those who join pay a $50 lifetime membership fee and fill out an online form with their contact information, symptoms, challenges, and diagnoses.
There are currently over 4,000 members looking to connect with those facing similar medical issues.
These types of connections can be invaluable, both for parents of children with chronic illnesses and adults alike.
Research has shown a link between peer support and the self-management of individual conditions. That support has been found to provide empathy and encouragement, advice, suggestions for alternative actions, and motivational feedback.
Dr. Christopher Stille is a professor at the University of Colorado School of Medicine and a pediatrician at Children’s Hospital Colorado.
When asked about the importance of making those connections for parents of children with chronic illnesses, he told Healthline, “It’s very important. We can give them medical advice, we can see their kid every few months or few weeks if we really need to, but they are with their kid 24/7 and having contact with other parents of kids with similar conditions really can help fill all the rest of the blanks.”
However, Stille said he’s not sold on the idea of a paid service to provide those connections.
“Family Voices is a big national advocacy organization for kids with special needs,” he explained. “They have a chapter in every state, and every state has a Family to Family Health Information Center (F2FHIC) staffed by parents of kids with special needs who have knowledge of the resources that kids can take advantage of.”
Many individual conditions also have specific organizations parents can join in search of that connection. These organizations set up camps, conferences, and online support groups for those wanting to find others dealing with similar health challenges.
“The health matchmaking system sounds great,” Dr. Stille explained. “But most of the kids we work with come from families that are fairly poor. Having a child with a chronic condition costs a lot of money, and a paid service for connection may be out of reach for many of those families.”
Many special needs families have found communities and made connections with others through social media.
However, Allison wasn’t comfortable with the lack of privacy that comes with social media. This is why she liked the idea of creating a private system to match those either battling health conditions themselves or caring for a loved one with a chronic health condition.
Plus, S1LY offers opportunities for those who can’t afford the lifetime membership fee.
For each membership sold, Allison told Healthline they donate a membership to someone fighting a rare or undiagnosed condition through their partners at the Rare & Undiagnosed Network.
In March of 2018, they also began working with the Ronald McDonald House Charities in Denver to provide families with lifetime S1LY memberships at no cost.
To fund this portion of the program, they created the Be Kind Project.
“Through the sale of jewelry and accessories that read the universal message of hope to ‘Be Kind,’ we are empowering humans to make a difference in the lives of each other,” Allison explained. “Simultaneously, we are spreading our mission to privately connect those with health conditions directly to each other.”
So far, Allison says the reception to S1LY has been incredible.
“From the start, patients, healthcare professionals, and even other organizations have continually told us, ‘We have been looking for something like this,’” she explained. “The positive feedback for our project has fueled us to continue to expand and develop S1LY into a forum that can affect change, allowing humans to feel cared-for, able, and understood.”
Allison’s future hopes and goals for the program include expanding the Be Kind project and continuing to provide S1LY memberships at no cost to those in a health crisis, while raising awareness for both invisible disabilities and inclusion.
As a mom of a child with a chronic health condition herself, Allison knows just how important these goals are.
“Nothing compares to feeling understood, regardless of what the challenges may be. I still think about those late night ambulance rides full of the fear of the unknown, weeks-long hospitalizations where the outside world completely stopped and our perfect little one was fighting to thrive,” she explained.
Allison doesn’t want other families to experience the same fear and isolation they did.
“We lived in this bubble oftentimes where even our care team couldn’t tell us what could come next. Navigating a complex medical journey for yourself or your child can feel debilitating,” Allison said. “Even as much as loving friends or family offer support, the unspoken understanding of the circumstances from someone who has been there can bring a peace to your inner being that truly empowers and strengthens one’s fight.”
If you’re hoping to connect to someone with a similar health condition as yourself or your child, Allison told Healthline you can register to be matched at no cost using the promo code BEKIND when you visit Some1likeyou.com.
“Data is never shared or sold, nor do we monitor or have access to any of your communications. Our program simply allows individuals to be matched to someone who understands what they are going through, without posting any of their health qualities or conditions of their children on a message board or social media,” Allison said.