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A Journey of Limitless Love

Nine years ago this week, we had a routine ultrasound scheduled to check on the health of our baby. But it was anything but routine.

After five plus hours of tests, and our first visit to a pediatric cardiologist, our own hearts ached at the news: Our baby girl had an Atrioventricular (AV) canal defect or a large hole in the center of the heart. To survive, she would need open heart surgery, and she most likely also had Down syndrome. An additional test had been done for that but the results would not be back for several days.

We were crushed, angry, furious…heartbroken.

But we had no idea how our journey with this baby girl would overcome all those terrible feelings and bring such fierce love and determination. And a passion to work toward change.

Lila is now eight years old and such a blessing. Our journey has not always been easy, but it has been more than worth it. She has taught us so much about kindness and acceptance and understanding – and love.

She defies the stereotypes that too often accompany those with disabilities or differences. She’s NOT happy all the time; she has a full range of emotions.

She’s NOT unteachable; she learns differently and needs additional help and methods of learning to master concepts.

She’s NOT limited; she’s as limitless as we choose to see her when providing options and opportunities.

Ironically, we received Lila’s diagnosis around the Martin Luther King Jr. holiday. Now, eight years later, we can see a purpose in that timing.

Our journey with Lila has inspired us to share her story with anyone who will listen because there is still much work to be done if ALL people – regardless of race, gender OR ability – are to be afforded equality and opportunity.

That journey led to the creation of Limitless Purpose, a nonprofit that will work to provide resources and opportunities for all children to reach their limitless potential. A kick-off celebration will be held from 10 a.m. to noon on Saturday, March 21 at Leo’s Landing, an inclusive playground at Saluda Shoals Park in Columbia. Join us to learn more, play a little and celebrate the differences of those around us. Come see for yourself all that Lila IS, and all she isn’t.

Author: limitlesslila

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LIMITLESS LILA

Dispelling myths so every child can be limitless