Meet Leo
Leo is a loving, sweet, and ornery five year old who lives on a ranch in Oklahoma with his family. He enjoys swimming, being outside and riding horses. Leo encourages us to look for the positive in each day and to enjoy the ride.
We invite you to watch his video, read his story, and subscribe to our podcast to listen to an interview with his mom & dad.
Lauren and Bob welcomed Leo to the world via c-section following a typical pregnancy. Shortly after birth, Leo had trouble feeding and maintaining his body temperature. Upon discharge, Bob and Lauren noticed that Leo was having muscle spasms. About a week later, they took Leo to a children’s hospital where an MRI showed white matter and brain bleeds.
By the time Leo was 8 months, the couple grew more concerned that Leo had stopped eating and was not meeting milestones. They took him back to the hospital where a swallow study showed that he was aspirating liquids. Leo underwent g-tube and fundoplication surgery. While they were in the hospital, the family was presented with the opportunity to do Whole Exome Sequencing, in depth genetic testing, which is usually a long process.
Three months later, Leo was diagnosed with Aicardi-Goutieres Syndrome, a rare genetic disorder that affects the brain, spinal cord and immune system. There are only 400 cases known in the world. Doctors who presented the diagnosis knew very little about the syndrome and shared that life expectancy was only a few years. Leo’s diagnosis affects almost every aspect of his daily life, including the way he moves, sees, eats, and communicates.
Lauren and Bob joined a Facebook group for families of children with Aicardi-Goutieres Syndrome and quickly found their tribe and life changing direction. The families in the group encouraged them to reach out to the Children’s Hospital of Philadelphia (CHOP). The doctors at CHOP welcomed Leo with open arms and the family flew from Oklahoma to Philadelphia for a compassionate care drug trial. The family has continued to travel 3-6 times a year for the past 3 years for care with the team who are the only experts in the world. “We were told to not expect Leo to live very long at all when first given the diagnosis, but he has continued to surprise everyone with not only living but thriving in his own way,” Lauren explains.
Today, Leo is a loving five-year-old who likes swimming, being outside and riding horses on the family ranch in Oklahoma. He enjoys the freedom of a wheelchair for mobility, a g-tube to eat, and an AAC eye gaze device to communicate. Leo works hard in Speech, Occupational, Physical and Aquatic therapies and his family celebrates every inchstone. Lauren shares, “Our number one goal is to give Leo a life filled with joy and as many experiences as possible.”
Time to get loud shouters!
Throughout the month of March we will be shouting loud for Leo!
So click here to shop now where every purchase in March will go towards helping the family save up for a wheelchair accessible van. To help support kiddos like Leo every month, click here to start a monthly subscription.
Every purchase in March will go towards helping Leo’s family save up for a wheelchair accessible van.
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Bloom Where You Are Planted – Adult Tee
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Celebrate the Good Days – Adult Tee
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Bravery Knows No Size – Adult Tee
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Roads Worth Choosing – Adult Tee
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Every Breath, A Gift – Adult Tee
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Do Small Things with Great Love – Adult Tee
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Make Waves – Adult Tee
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Bold & Kind – Adult Tee
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Stronger Together – Adult Tee
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Savor the Sweet Life – Adult Tee
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Stay Curious – Adult Tee
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More to the Story – Adult Tee
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Built for Life – Adult Tee
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#goshoutlove Sweater
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Simply Joy – Adult Tee
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Celebrate Always – Adult Tee
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Courageously into the Unknown – Adult Tee
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Keep Crushin’ It – Adult Tee
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We Can Do Hard Things – Adult Tee
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One Tough Mother – Adult Tee
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Everyone Belongs – Adult Tee
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Radiate Joy – Adult Tee
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Enjoy the Ride – Adult Tee
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Shine Bright – Adult Tee
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Find Rest in Goodness – Adult Tee
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Limitless – Adult Tee
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Live in the Light – Adult Tee
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Even in the Storm – Adult Tee
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Love Dives Deep – Adult Tee
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Different is Never Less – Adult Tee
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Bloom Where You Are Planted – Youth Tee
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Bravery Knows No Size – Youth Tee
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Roads Worth Choosing – Youth Tee
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Every Breath, A Gift – Youth Tee
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Do Small Things with Great Love – Youth Tee
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Make Waves – Youth Tee
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Bold & Kind – Youth Tee
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Stronger Together – Youth Tee
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Savor the Sweet Life – Youth Tee
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Stay Curious – Youth Tee
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Keep Shouting – Youth Tee
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Resilient – Youth Tee
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‘Tis the Season – Youth Tee
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More to the Story – Youth Tee
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Built for Life – Youth Tee
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Climb & Shine – Youth Tee
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Celebrate Always – Youth Tee
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Courageously into the Unknown – Youth Tee
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Keep Crushin’ It – Youth Tee
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We Can Do Hard Things – Youth Tee
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One Tough Cookie – Youth Tee
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A Voice is Power – Youth Tee
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Known & Loved – Youth Tee
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Brave – Youth Tee
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A Smile is Music for the Soul – Youth Tee
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Everyone Belongs – Youth Tee
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Joy is Where You Are – Youth Tee
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Advocate – Youth Tee
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Stay Present in Today – Youth Tee
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Adventure Awaits – Youth Tee
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Radiate Joy – Youth Tee
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Enjoy the Ride – Youth Tee
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Shine Bright – Youth Tee
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Take Care – Youth Tee
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Find Rest in Goodness – Youth Tee
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Limitless – Youth Tee
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Live in the Light – Youth Tee
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Kindness Connects Us All – Youth Tee
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Even in the Storm – Youth Tee
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Love Dives Deep – Youth Tee
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Different is Never Less – Youth Tee
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We Are What We Roar – Youth Tee
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Onward – Youth Tee
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Bravery Knows No Size – Toddler Tee
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Roads Worth Choosing – Toddler Tee
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Every Breath, A Gift – Toddler Tee
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Do Small Things with Great Love – Toddler Tee
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Make Waves – Toddler Tee
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Stronger Together – Toddler Tee
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Savor the Sweet Life – Toddler Tee
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Stay Curious – Toddler Tee
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Keep Shouting – Toddler Tee
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Resilient – Toddler Tee
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‘Tis the Season – Toddler Tee
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More to the Story – Toddler Tee
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Built for Life – Toddler Tee
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Climb & Shine – Toddler Tee
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Celebrate Always – Infant Tee
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Courageously into the Unknown – Toddler Tee
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Keep Crushin’ It – Toddler Tee
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A Voice is Power – Toddler Tee
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Known & Loved – Toddler Tee
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Same Storm, Different Boat – Toddler Tee
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Brave – Toddler Tee
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A Smile is Music for the Soul – Toddler Tee
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Everyone Belongs – Toddler Tee
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Joy is Where You Are – Toddler Tee
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Advocate – Toddler Tee
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Radiate Joy – Toddler Tee
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Live in the Light – Child Tee
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Kindness Connects Us All – Child Tee
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Even in the Storm – Child Tee
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Love Dives Deep – Child Tee
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