My niece Annalise, who is 12, is a kid who embraces others, especially those with disabilities. She understands that disability just means different. I would love to take credit for this but it is not because of me, it is because of her mother, Laura. She began introducing inclusion at a young age. I remember seeing the American Girl doll wheelchair in Annalise’s room several years ago — you likely saw the picture in a Facebook post.
Why is this important? Because inclusion starts early and often. Today Annalise plays on a soccer team with a young teen who has schizencephaly (this teammate was recently the subject of an Apple accessibility video, which features the soccer team), she adores her niece with Down Syndrome, she is buddies with a boy who suffered a TBI, and twice she has grown out her hair to donate to Children With Hair Loss. At almost 13 years old, she intuitively knows that disability is a part of life but it does not define you.
Recently, Annalise was assigned to give a speech about her hero for her 6th grade oratorical competition. Annalise chose to speak about her mother’s dear friend Corinne, whose young daughter Chloe passed away from Spinal Muscular Atrophy in 2008. Annalise was only four years old when she met Chloe, but it was her first exposure to a child with a disability. That first lesson of inclusion and acceptance has stayed with her to this day. Please enjoy Annalise’s speech below to learn more about Chloe (who would turn 10 on July 6!), her enduring legacy, and her heroic mom, Corinne.
How does a person take a lifetime of loss and turn it into a life of positivity?
A hero is someone brave, kind, and strong. A hero doesn’t have to be famous. I believe we are surrounded by heroes every day. My hero Corinne Painter is an example of this. She is a woman who has faced many tragedies in her life, but has become stronger, more compassionate, and determined to improve the lives of others.
Corinne is my mom’s best friend, so I’ve known her my entire life. She is a beautiful, caring, and fun-loving woman. If you met her, you would never guess what she has been through in her life. By the time Corinne was only 14 years old, she had lost both of her parents. Corinne and her sister lived with their grandparents after their parents passed away. Even though her childhood was difficult, Corinne went on to graduate from Furman University.
Eventually Corinne got married, and she and her husband Matt had a beautiful daughter named Chloe. At first Chloe appeared to be perfectly healthy, but at Chloe’s one month check-up, Corinne and Matt learned that something was terribly wrong. After many tests, Chloe was diagnosed with Spinal Muscular Atrophy, also called SMA. Corinne and Matt were told the awful news that Chloe would probably die before her second birthday. SMA is a genetic disease, which means it is passed down from parent to child. Most people have never even heard of SMA, but it’s actually the number one genetic cause of death in babies. SMA affects the nerve cells in the spinal cord, so it slowly takes away a person’s physical strength. Babies with SMA aren’t able to crawl, walk, or eat, and they lose the ability to breathe. However, SMA does not affect the brain, and babies with SMA are usually very smart.
Corinne and her husband were devastated, but they were determined to make Chloe’s life as happy as possible. They would read, sing, and play with Chloe. Like most babies, Chloe loved Elmo, Baby Einstein, and The Wiggles. She couldn’t eat, but she loved to lick apples and other foods. Chloe was very smart and communicated through different facial expressions and noises. Corinne dedicated every moment to Chloe. She fed Chloe through her feeding tube and learned to use special equipment to clear Chloe’s airways when she struggled to breathe, which happened almost daily. Corinne was truly Chloe’s hero because there were many scary moments when she had to save Chloe’s life. During that emotional time, Corinne and Matt cried and prayed a lot, but were supported by family and friends. When Chloe was 19 months old, she peacefully passed away in Corinne’s arms.
Corinne and Matt’s hearts were broken, but two things kept Corinne going. First, just three months after Chloe died, Corinne and Matt welcomed a strong and healthy daughter named Lydia, and they were so grateful that she did not have SMA. Secondly, Corinne wanted to do whatever she could to prevent more children dying from SMA. Corinne spreads awareness about SMA, and she is involved in organizations like Cure SMA. Corinne has helped raise thousands of dollars for SMA research so that scientists can look for a cure. And the fundraising is working! When Chloe was diagnosed in 2007, very little could be done to help babies like her. Now 10 years later, scientists have learned how to keep nerves alive by injecting a special medicine into SMA patients. This medicine has helped kids with SMA gain strength instead of lose it. Without heroes like Corinne raising money and spreading awareness, these treatments would never be possible. Now babies with SMA have hope.
When Chloe was alive, she worked with an occupational therapist, also called an OT. An OT doesn’t cure their patients, but they find ways to make life easier for them. For example, Chloe’s OT made a piece of equipment that helped Chloe lift her arms to play with toys. Watching how the OT changed Chloe’s life made Corinne realize that she wanted to help other families in the same way. After Chloe passed away, Corinne found a wonderful OT program, and by chance, she was assigned to work with the same OT that helped Chloe! Corinne felt this was God’s way of saying she was meant to become an OT. Today Corinne is an OT and she helps many families. Most of the kids she works with have autism, Cerebral palsy, and Down syndrome. Corinne is a hero to her patients and their families because she is changing their lives, and also because she can truly understand what they are going through.
Corinne and Matt miss Chloe every day, but they are grateful for the impact Chloe had on their lives. Their daughter Lydia is now 8 years old, and she loves to talk about her big sister in heaven. Corinne is not a celebrity or a famous athlete. Her name will not be in the history books. But she is still a hero. She was a life-saving hero to Chloe, a hero to the SMA community, and she is a hero to the children she helps each day. Corinne proves that everyday people can be heroes, and she is exactly the type of person I want to be when I grow up.
by PWS Builder
I am proud to announce that my role as Brand Ambassador for Global Disability Inclusion, LLC has been extended for 2017.
Working with Global Disability Inclusion (GDI), is an important part of my personal mission to create disability awareness. What better way to create change than by providing what I consider to be visual proof? By partnering with GDI, we not only provide proof through modeling efforts but by working with Fortune 500 companies to create disability inclusion programs which translate to career opportunities for people with disabilities.
In the last few years, we have been at the forefront of disability inclusion within the fashion industry. Some of our accomplishments include working in conjunction with production house FTL Moda in the first completely inclusive New York Fashion Week runway show. I had the opportunity to walk the runway as the first amputee without a prosthetic limb. Shortly thereafter, national luxury department store Nordstrom hired me to model for their anniversary catalog and later for their winter catalog. We have gone on to gain international press in publications ranging from GQ Italy, GQ Japan, The Sun, People, Cosmopolitan, and more.
The intention of my venture into modeling has always been to challenge the beauty standards created by society and perpetuated by the fashion industry. Let’s face it; we live in a world made up of all types of people with different cultures, identities, and lifestyles. To limit “beauty” to one particular look is unrealistic and unrepresentative of the world in which we live. By limiting what we deem socially acceptable in advertising, film, and print, we are making a silent statement about who we find acceptable within society. I’m proud to work with GDI in their goal to break down all of the stigmas surrounding disability so that we can truly create a more inclusive world.
Please stay tuned as we continue to create change!
Business Photo: Photographer Rich Heaton
Head shot with twisted hair: Photographer Marc Edwards and designer Ari South