OTHERS

Living with Beals syndrome

Rare Disease & Syndrome

Karen Gasperini

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 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). Recently I have been dealing with my ribs dislocating and my hips becoming unaligned. My ribs tend to dislocate every 6-8 days. They start to push into my lungs, neck, and under my shoulder blades causing some pinching of my nerves when they shift. This can be quite painful and makes it difficult for me to breathe. I go to physical therapy to get them manually pushed back in once a week.

A brighter day with Beals syndrome

Nevertheless, none of these obstacles have ever stopped me from living my best life! I have an amazing daughter, love, family, friends, wonderful parents & I have several brothers and a sister. 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. I have been spreading awareness about my rare disease and about what it is like to have to wear Ankle-Foot Orthoses (AFOs, leg braces). When I was younger for my clubfeet and what it is like to be on the other side of the window looking in now watching my daughter have to wear them for her clubfeet. I remember not liking to wear them or to have 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 ‘am 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 like me. I think it would have been easier for me to understand as a child if I had something visual to look at and make me feel included.

Giving children what I didn't have

Giving children what I didn't have, starting with a character that wears AFOs just like they do. 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 mole 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 is 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 make my stories into a book series. Arianna (now fifteen going on sixteen this year) 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 last year in October “Arianna’s Magic Boots Vol 1.” Where she goes on a jungle adventure. The second book was published this year in March “Arianna’s Magic Boots, Vol 2. “Underwater Sea Adventure.” Where she goes on an underwater sea adventure to meet some mermaid friends.    You can find both of my first two books available at https://www.amazon.com/Ariannas-Magic-Boots-Karen-Gasperini/dp/1978054297 & https://www.barnesandnoble.com/s/ariannas+magic+boots ·

Picture guide

Picture of me (1988) wearing my leg braces with my little brother Isaiah,  Picture of Arianna with her red headphones,  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’s Magic Boots Vol 2. “Underwater Sea Adventure,”  Picture of “Arianna’s Magic Boots Vol 1,  Picture of the character Arianna walking down the stairs with her AFOs,  Picture of Arianna and her mermaid friends from Vol 2,  Picture of Arianna as a mermaid from Vol 2,

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