Daughter's diagnosis prompts mother to leave corporate career for new life

Cecilia Fornieles and her husband faced a life-altering reality when their four-month-old daughter, Joaquina, was diagnosed with generalized hypotonia. As first-time parents in their early thirties, they had envisioned a typical family life, but the diagnosis ushered in a new way of living, marked by constant medical appointments and therapies.

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When the doctor referred us to the first rehabilitation center, my concern was knowing how many sessions I would need, how long the treatment would last, and when everything would return to normal. I thought there was a concrete solution, a kind of finish line. Over time, I understood that what was beginning was another way of living.

Initially, Cecilia sought a clear timeline for treatment, expecting a return to normalcy. However, she soon understood that Joaquina's condition required a long-term commitment. The family's routine became a complex schedule of physiotherapy, occupational therapy, and speech therapy, often involving travel between multiple centers each week. This demanding regimen occurred while they worked and cared for their younger daughter, Damasia, who was two years younger.

Cecilia vividly recalls observing other mothers at therapy centers, doing homework with their children in car glove compartments while waiting. This scene highlighted how the treatment process also strained family dynamics, affecting relationships. The realization that the challenges extended beyond Joaquina to the entire family became a pivotal moment.

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There were days when we spent more time traveling from one therapy to another than at home. Many parents know that feeling of taking their children from one clinic to another or moving them from one center to another. Everything was designed for the patient, but very little for those who supported that journey.

"The disability was not just Joaquina's," Cecilia reflected. "For a long time, we thought the disability was something that only happened to Joaquina. Then we understood that it also transformed us." This profound insight reshaped their work, time management, parenting approach, and future plans, with each family member experiencing the challenge differently. This personal journey fueled Cecilia's conviction to create a more supportive and integrated environment for families facing similar circumstances.

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The disability was not just Joaquina's. For a long time, we thought the disability was something that only happened to Joaquina. Then we understood that it also transformed us. It changed our way of working, organizing time, raising Damasia, making decisions, and projecting the future. Each member of the family began to face that challenge from a different place.