My Family's Rare Journey

As a father of two daughters with rare conditions, I’m no stranger to adversity. We’ve walked through impossible trials, battling fear, pain and sadness along the way. But these experiences have led me to understand the power in my ability to control how I respond to situations.

My journey began nine years ago when I learned that my daughter would lose her left arm and right leg due to an uncommon congenital abnormality that occurred in utero. The days leading up to her birth were physically and emotionally challenging as the fear of the unknown haunted me. I was devastated knowing that my daughter would have a long road ahead of her. But that pain vanished and I was filled with love and gratitude the moment I held my daughter Eve in my arms – she was healthy, smart and beautiful. I knew that the strength and determination that spared her life would enable her to change the world.

The strength I had built following Eve’s birth was put to the test during the pregnancy of my second daughter as doctors informed us that she had suffered extensive brain damage as a result of contracting congenital cytomegalovirus (CMV), a virus that for most people is not a serious health problem but can cause serious complications to babies if infected in utero. Once my daughter Felicity was born, her doctors were certain the brain damage would impair her hearing and cause internal complications, shredding the ounce of hope I had been holding onto. The challenges of raising a child with a prosthetic leg suddenly became miniscule as I tried to comprehend the reality of our future caring for a child who we were told would never be able to use her brain, body or words. This realization is the moment that my wife, Katie, and I promised each other that we’d always choose joy – even during our darkest moments.

A Joyful Future

Choosing joy does not undermine the challenges of caring for a child with a rare condition; it helps overcome them. As a father of children with rare conditions, choosing joy is celebrating each milestone and learning to adapt when necessary – it’s never giving up hope. Parents in the rare community aren’t given a standard checklist of milestones their children are expected to complete. Unfortunately, answers to questions such as, “How do I get my nonverbal six-year-old to communicate with me?” are different for everyone, especially when your children are so rare that only several others like them exist. Therefore, we answer our own questions. The beauty in this is the feeling of pure joy when my daughters do reach major milestones that doctors once considered impossible.

Felicity Frugé sits on a large patio chair and smiles

Felicity fought hard to exceed her doctors’ expectations – and she has! Today, she’s a happy six-year-old who’s mindful of what’s happening and loves to be included. Felicity is constantly smiling and laughing, and she has the gift of brightening everyone’s day. Despite being nonverbal, she can say “E” when she wants Eve – one example of a sweet victory that my family celebrated together in pure joy. These are the moments that remind me to choose joy, even when life seems impossible. These moments give me hope.

Making a Lasting Impact

I strive to help my daughters find joy in their differences because I believe that you make the world better by sticking out, not fitting in. Eve’s bravery is a testimony to this belief. She says, “when I’m in Heaven, I don’t want two arms and legs. I want to be just the way I am.” Eve chooses to find joy in being rare and unique, and because of it, she will be unstoppable in her endeavor to advocate for those without a voice – including her sister Felicity. Because Eve is unique, she recognizes the suffering needs of those who are overlooked, and she celebrates their greatness. While most kids at the Disney World parade cheer for the iconic characters performing in the spotlight, Eve waves to everyone in the parade, including the dancers, singers and support staff. She strives to make others feel special and has the beautiful gift of bringing joy to those who need it most. Eve’s strength is unimaginable for a nine-year-old and because of it, she will make our world a brighter place.

Eve Frugé sits underneath trees with the sun shining on her

Being a parent of children with rare conditions is difficult, but choosing joy has helped me learn to love being a rare family. I experience joy each day through Felicity’s laugh and in Eve’s brave, kind heart. I believe others in the rare community have the potential to impact the world by choosing joy. Choosing joy is becoming an advocate and building an army of supporters to help us move toward a brighter future; we need to let people know how hard our fight is, how to fight with us and what we need to persevere as a community. While we cannot always control what happens in life, our ability to overcome obstacles shapes us into the impactful people we’re destined to become. My hope is that those in the rare community learn to embrace their differences and make the world a more inclusive place because of them.

About D.L. Frugé

D.L. Frugé, his wife Katie, and their three daughters live in Fort Worth, Texas, next to the university, the zoo, and a lot of good restaurants. He has a Ph.D. in theology and encourages everyone to focus on the value of relationships which are honest and joyful—and the hard work required for this.

D.L. is passionate about the Fort Worth ISD Special Education PTA as it provides resources for parents as well as other activities and events throughout the year for students, parents, and teachers. He believes that Camp No Limits, a four-day camp for amputees and those with limb differences to gather together, is the most inclusive atmosphere he has experienced. To learn more about the camp and its locations, visit https://nolimitsfoundation.org.

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