Pushing through the pain with Beals syndrome
I push through the pain of living with congenital contractural arachnodactyly (Beals syndrome), severe Scoliosis, and Clubfeet. Congenital contractural arachnodactyly (Beals syndrome) is an extremely rare genetic disorder that is identified by certain joints such as my fingers, elbows, knees, and hips. It is often compared to or known as the brother/sister to Marfan syndrome (MS) but one difference that sets them apart is the crumpled top of my left ear. However, just like MS, I have very abnormally long and skinny fingers and toes. I have severe Scoliosis that is so bad that my spine sticks out. That's a hump on the right side of my back. I have club feet so I walk inward (pigeon-toed). I used to have to deal with my ribs dislocating and my hips becoming unaligned. My ribs used to dislocate every 6-8 days. When my ribs did move they would start to push into my lungs, neck, and under my shoulder blades causing some pinching of my nerves when they shifted. This can be quite painful and makes it difficult for me to breathe. Thankfully I had an amazing physical therapist, Mr. Kevin Muldowney, author of “Living Life to the Fullest with Ehlers-Danlos Syndrome,” created a custom plan he made just for me. He not only let me make a video of his treatment for future reference but he did hands-on training with my fiancé Juan Quiles. So, that way he will know how to help me which has helped me thrive tremendously. It has been a blessing to get back to being able to do everyday things that some people who are able-bodied might take for granted such as getting out of bed, taking a shower, light cleaning, cooking, and visiting family members. Even though Juan tends to be my caregiver it’s a great feeling to have the option to do things around the house and not always be limited.
A brighter day with Beals syndrome
Nevertheless, none of these obstacles have ever stopped me from living my best life! I have amazing children who have been birthed, fostered, and I am now blessed with stepchildren. As I mentioned, I have the devoted love of my life Juan. We have the most loving blended family anyone could hope for. We do family videos on TikTok, karen.and.juan (Quiles Family). Moreover, I have my family members, friends, wonderful parents, several brothers, a sister, and sister in law who have all been wonderful. I also have tons of other people who grew up in our household who are family to me. They all love and support me with whatever my goals are. I walk in faith because I am a child of my lord and savior Jesus Christ. I am an advocate for people with my disabilities, a public figure on Instagram, and a disabled model. I'm extremely grateful I got to graduate from Fisher College in Boston with a couple of degrees in “General Studies” and “Medical Billing & Coding.” I also have been spreading awareness about my rare disease and about what it is like to have to wear Ankle-Foot Orthoses (AFOs, leg braces). I remember not liking to wear them or having to go to physical therapy (PT) as a child. I wanted to go play outside like the rest of the children in my neighborhood but my mom would explain to me why I needed to do PT first. Now that I'm older I understand more of what my mom was trying to tell me and I wish there were children’s books out there that had a character that looked like me and wore AFOs. I think it would have been easier for me to understand as a child if I had something visual to look at which included people like me.
Giving children what I didn't have
My daughter Arianna has clubfeet just like I do. She has been wearing AFOs for some time now. When she was a toddler she would complain about why she had to wear them and why she had to go to physical therapy. Sound familiar? When I started to recognize myself in her eyes I decided I needed to break the mold then and there. I told my then five-year-old daughter that wearing leg braces didn’t have to be a bad thing. She could think of it as something magical. She could call her leg braces (AFOs) her “Magic Boots” and with them and her imagination she could go on adventures anywhere. All she had to do was stomp three times and say “Away we go” then her new adventure would begin. My daughter loved going on different adventures with her “Magic Boots.” As time went on she would tell the stories to other children at PT and they loved to go on adventures with her as well. As she got older my daughter didn’t need the stories anymore because she became old enough to understand why she needed to go to PT or why she needed to wear her leg braces (AFOs). A family friend started to publish his children’s books and recommended that I should try again and make my stories into a book series. Arianna (now twenty) suggested that I do it as well. She said they helped her and her friends a lot. So, that is what I did. I published my book series, of course, naming my main character after my daughter Arianna. The first book was published in October of 2017 “Arianna’s Magic Boots Vol 1.” Where she goes on a jungle adventure. The second book was published in March 2018 “Arianna’s Magic Boots, Vol 2. “Underwater Sea Adventure.” Where she goes on an underwater sea adventure to meet some mermaid friends. Last year in December 2022, I turned my first book into a coloring book. You can find both of my first two books and coloring book available at https://www.amazon.com/Ariannas-Magic-Boots-Karen-Gasperini/dp/1978054297
Picture of me (1988) wearing my leg braces with my little brother Isaiah, Picture of the character Arianna walking down the stairs with her AFOs, Picture of me (1983) sitting in my ducky on Christmas morning, Picture of my two children’s books with Arianna’s AFOs, Picture of Arianna Age 5 (2007) with her pal Pearl, Picture of Arianna and her mermaid friends from Vol 2, Picture of Arianna Magic Boots Coloring book, Picture of Arianna (2022), Picture of me holding my books when they won honorable mention with 'Story Monster," Picture of me with a sign "Always believe in yourself," Picture of me graduating day, Picture of me with fiance' Juan Quiles. Me modeling glasses, me sitting outside