Lockard Family

04.02.2024

Logan and Iris are two year-old identical twins whose gentle smiles and dark curls pull me in. I met them, together with their brother and parents Trisha and Chris, on Zoom when the girls were tiny, soon after they were diagnosed with SPTAN1, a rare genetic disease. At the very dawn of their lives, their fate was handed to their family on a plate - die young or survive, trapped in the minds and bodies of infants whose breathing, eating, sleeping and moving would forever depend on others. 

The trajectory of Trisha and Chris' lives is far from what they had dreamed of, at first glance unbearable even to me after what I have lived with Mila. Every moment of every day and every night consumes them. But the delicate balance they have found of fighting hard for a treatment while also accepting their life today, of feeding, diapering, suctioning and rehabilitating their girls while at the same time pausing to take in the smallest moments of joy, is something so beautiful that it must be shared. 

04.09.2024

For many rare disease parents, we carry the heavy weight of knowing that our children depend on us to keep them alive. Trisha and Chris Lockard face this for both of their girls, Iris and Logan. They trade off throughout each day and night handling feeding tubes, oxygen machines, seizure monitors and mucus suctions. There is no room for error. They carefully hold their girls, dress them, feed them, put their leg braces on, and soothe them back to sleep. Like I felt about Mila, in many ways children like ours become extensions of ourselves, little bodies and little minds who need us.

04.17.2024

Like my son Azlan felt when Mila was alive, Jude often finds himself alone. He was 3 years old when his sisters were born and soon after diagnosed with a rare genetic disease. He leans back and watches as his parents prepare meals and medications, give oxygen, and dress, feed and position his sisters in their therapy equipment.  

Jude may never remember life as a typical kid with a typical family. His life is different now, but that's all he knows. He loves his sisters and wants them nearby. His parents want him to feel part of a family, like his friends do, so every few weeks they rally and bring their girls to his soccer game, packing up three children, a double stroller, bag of diapers, water, food, medicines, breathing machines and neck pillows, then unpacking them all when they arrive, carefully positioning the girls and making their way to the field. 

At the end of the week, there is no extra energy left in them, but they somehow find it for Jude.

04.30.2024

For most parents, it's the big moments in our kids' lives we hold onto - the first time swimming across the pool, the first soccer trophy, the first piano recital. But for families with children like Logan, Iris and Mila, it's the tiniest moments that bring us the most happiness. A small clenched fist that reaches out for connection, a possible intentional smile, little eyes intensely locked with our own, sending silent love through the air. 

Despite the pain and exhaustion, these are the moments for parents like us that make us wake up each day and keep going. 

05.03.2024

When Mila started rapidly losing her abilities, I began to see my own brain and body in an entirely different way. It suddenly seemed miraculous that people all around me were capable of lifting their feet to walk, reaching out their arms to grab things, driving cars and navigating busy streets, and feeding themselves by chewing and swallowing pieces of carefully cut food.

For parents like us, Trisha and Chris must take over where Logan and Iris' bodies and brains can't. They pump oxygen into little mouths, strap small bodies into devices to help blood circulate, open tightly clenched hands and massage fingers, and sit both girls in their feeding chairs, tilted back with supportive neck pillows, carefully spooning warm pureed food into their hungry mouths. 

All of this because of a little mutation in the wrong place. A genetic lottery that millions like our daughters didn't win.