All parents become caregivers at the birth of their children. Yet, either because of a birth anomaly, illness or accident—for many, it becomes who they are. For decades of their lives, families selflessly and lovingly harness their energy, priorities and resources to build a workable family routine and optimize their child’s development and engagement in the world.

This month, we celebrate all of you—especially those we are privileged to know in our Ability Beyond Family, such as JoAnn and Federico Turegano, parents of Emma, 33, a member of Ability’s Day Program.

“Emma is a happy girl!” JoAnn and Federico frequently repeat that phrase as they share examples of Emma’s love of people, travel, music, animals, theater and going ANYWHERE. “She even loves going to the doctor and going to labs to get her blood drawn; sweet people respond with such kindness to her.”

Lennox Gastaut Syndrome

Emma has Lennox Gastaut Syndrome (LGS), a seizure disorder starting at age six months. With up to 20 seizures a day, before more recent medications, Emma’s seizures cause her to collapse and lose consciousness facing the risk of severe injury.

LGS has caused profound developmental limitations which have left Emma unable to speak and with the physical and cognitive abilities of a two-year old—except for her highly developed social skills which are aided by an app on her her iPad that empowers her to communicate with signs.

The world is magical to Emma and she is a joyful force to those around her—she reacts to puppets and animals with the delight of having understood them fully, and musical theater completely transports Emma.

JoAnn and Federico dedicate their lives to making hers meaningful, productive and safe. For Emma, “meaningful” is being around people and being on the go. She fully reacts to expressions of kindness; people respond to her, so she easily forms bonds with people she encounters. Throughout Emma’s life, professionals have commented on her “excellent social skills” and her “very strong intent to communicate” which have heightened her parents’ awareness to keep her constantly engaged.

She thrives in her Ability Day Program, loves her staff there; enjoys her daily routine at home with her parents and regular visits to her siblings and their children who live in New York City.

The Daily Routine

Up at 7:00am during the week, Federico, who recently retired, drives Emma to her Ability Day Program. Though not wheelchair dependent, Emma always has her wheelchair in tow when away from home.

After they pick Emma up from Day Program, she has teatime with her parents, plays on her iPad, has her bath, dinner then bedtime. Her routine keeps her happy and well-rested for her active Ability Beyond weekdays working on life skills, playing Bingo at an assisted living, going on day trips or organizing Food Rescue donations with her Ability group. Weekends always include travel. Whether it’s the train to visit siblings, planes to visit distant relatives, going to a show or local trips to run multiple errands—Emma loves to be busy, and every form of transportation, and her energetic parents make it happen.

Before Federico retired, his work involved extensive international travel that left JoAnn alone at home with Emma. Always top of mind for JoAnn was “What if something happens to me and I can’t call for help; what would happen to Emma?”

It’s a nagging concern all parents face until children can dial 9-1-1, but like so many other families with special needs children, JoAnne and Federico will never have that peace of mind. Yet, currently, their lives have entered a new phase having both parents at home—safety issues now seem much less formidable and anxiety-producing. Occasionally, an outside caregiver comes to their home to stay with Emma, so her parents could attend an event—it’s a rare and memorable treat they mention with gratitude.

JoAnn and Federico enjoy the world through Emma’s eyes, and never fail to make her life as full as possible. Right now, they are savoring life altogether as a happy, busy family centered around Emma’s needs. “Everything in life is about your child having the best life possible”, they both state with conviction.

It’s hard for them right now to know what’s ahead, but they are such loving and deeply committed parents/caregivers that you know they will figure it out; it will be a wise, caring and thoughtful decision — and Emma will continue to be a happy girl.

We salute you, JoAnn and Federico, and all of our Ability Beyond Families and Caregivers—let’s hear it for our Ability Heroes!

Take Action

Ability Beyond is a leader in serving people with developmental disabilities, autism, and other neurological, physical and mental health challenges. And it’s the generous support of the community that helps make the programs families like the Turegano’s rely upon possible. Donate today so we can help more families and fulfill our mission to discover, build and celebrate the ability in all people.