While pregnant with each of our children, we searched our hearts and souls to find a name that would have special meaning. For our third child, we chose Luisa, which means “famed warrior.” Throughout her life, our prayer over Luisa would be that she advocates for those unable to speak for themselves. We had no idea how profound this name would become so early in her life.
At 20 months of age, Luisa was diagnosed with Rett Syndrome.
“Where will we go to receive therapy for her?” we asked the tight-knit Rett Syndrome community. Over and over, “United Ability” was the answer. Indeed, it was the right answer and we feel blessed to share our story with you.
Rett Syndrome is a severe neurological disease. It only affects girls, and we learned that slowly it would steal Luisa’s speech, her ability to walk, and her ability to functionally use her hands. In the midst of our grieving process, when our family could not imagine what the future would hold for her, United Ability therapists came alongside us and offered us HOPE.
Once we started therapies at United Ability, we no longer felt alone. Our therapists were authorities on the subject of Rett Syndrome, and we were introduced to their renowned Multi-Sensory Environment Room, a therapy environment expertly outfitted to benefit children especially like our daughter. Shortly after Luisa’s diagnosis, Lynn Roebuck, a speech-language pathologist at United Ability, began to discuss and trial augmentative communication devices with Luisa, who had 12 words at the time of her diagnosis and lost all verbal speech by age two and a half. Speech therapy at United Ability focused on finding alternative means for our child to communicate her wants and needs.
Before her second birthday, Luisa was approved for an eye gaze communication device so that she would be able to use her eyes to focus on pictures or words, utilizing the device to “talk” to us. Lynn was our guide all through the process – trialing different devices to find the right fit, helping to secure funding, programming the device, and finally providing the therapy needed to teach Luisa and our family how to use it.
Luisa is now able to communicate her wants and needs as well as her opinions. She creates novel three-word sentences using her device, and never hesitates to tell us to turn on her favorite TV shows.
Luisa also achieved gross motor milestones at United Ability, learning how to navigate stairs and uneven surfaces with Marliese Delgado, a physical therapist in United Ability’s Outpatient Therapy Program. Luisa continues to walk despite Rett syndrome’s cruel course. I attribute this in some measure to the wonderful help and instruction we received at United Ability.
Additionally, Fran Frost, an occupational therapist at United Ability, has helped our family create the perfect sensory room for Luisa. This will provide Luisa with the sensory input that best helps her to regulate, calm, and use her body to its full potential while being in an environment filled with things she enjoys. We cannot wait to transform Luisa’s room with all of Fran’s expert suggestions!
Paying It Forward – For Years to Come
From the moment we became connected with United Ability, we have always felt it was a safe place for Luisa and our family. To help ensure this could happen for other families in need, we established the Luisa R. Morlandt Endowed Fund for Speech and Swallowing Therapy. This was our way of giving back to the therapists and agency that have given us so much knowledge and support along this journey.
As a speech-language pathologist myself, I know the dedication that goes into serving children with complex needs. Unlocking a child’s ability to communicate radically changes their life and their family’s life. Safety at mealtime brings peace of mind to the entire family and it’s our mission to support our fellow families as they receive help in these areas. We’ve been there and want to come alongside others to help through our giving.
To establish our fund, we collaborated with Alison Berman, United Ability’s Chief Development Officer, and discovered that our donation could offer a second thoughtful gift: to help transform an outpatient closet into an incredible workspace. Today, this renovated room houses tools, equipment, and more for all therapy disciplines to access and use during their more than 5000 sessions each year. Bearing the name “Warrior,” this room was lovingly dedicated by United Ability in honor of Luisa.
To learn more about how you can leave an indelible legacy helping individuals with special needs, contact Alison Berman at 205.944.3907 or firstname.lastname@example.org