The story of Kyara Lis mobilized Brazil and the world two years ago. Diagnosed with spinal muscular atrophy (AME), the child depended on one of the most expensive drugs in the world to survive, Zolgensma.
After a long fight in court and online donations, Kyara took Zolgensma on November 19, 2020. Today, at the age of three, her family celebrates the little girl’s life every day.
In an interview with metropolises, Kyara Lis’s mother, Kayra Rocha, says her daughter’s evolution after she received Zolgensma was unbelievable. She explains that Kyara started to lift her arms easily, lift her head without crying when in the prone position, to have more firmness in her legs and her voice and crying became stronger.
Today, Kyara is already walking, even if she loses her balance easily, and, for the family, all this evolution is extraordinary. For them, it’s a miracle to experience this every day.
SMA is a rare severe neuromuscular genetic disease. It is degenerative, irreversible, and interferes with the body’s ability to produce a protein considered essential for the survival of motor neurons (SRM), responsible for simple vital voluntary movements, such as breathing, swallowing and moving.
Kayra says that the family, before Zolgensma, slept and woke up thinking about the functions that the girl could have lost and how many neurons would have died without treatment. But after November 19th, everything changed.
“Today we managed to free ourselves from afflictions and we live each day giving thanks to God for what we witnessed”, he says.
affective memories
Kayra does not fail to mention some remarkable moments that she witnessed alongside her husband and the couple’s other three daughters. When Kyara crawled and walked, she climbed the slide in the playroom by herself and lay on her stomach with her little hands supporting her chin are moments that will never be forgotten by the family.
The day Kyara took her first long swim and kicked the water a little harder was also enough to bring tears of emotion from Kayra and her husband.
Today, at the age of three, Kyara has a routine based on activities for her development and also on fun. She has physical therapy five times a week, occupational therapy, swimming, speech therapy and early stimulation.
She also plays with other children, but always under the supervision of nurses. Kayra points out that she respects her daughter’s limits and does not demand that she perform all the activities, but gives her a lot of attention and affection so that she feels stimulated and willing to face the routine.
At eight months, Kyara was diagnosed with Spinal Muscular Atrophy (SMA)Instagram
Kyara Lis 3At 1 year and 3 months old, she took Zolgensma, considered the most expensive medicine in the worldInstagram
Kyara Lis 5This year, Kyara will start in regular schoolInstagram
KyaraToday, the child has swimming lessons twice a week and is able to play with other children under supervision. Instagram
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Special cares
Before receiving Zolgensma, Kyara performed the therapies with much less intensity so as not to get tired, since fatigue causes motor neuron failure. She also spent a long time lying down or sitting in the same place.
Kayra says that her daughter is a naughty child, but they still don’t have independence and need special care. She falls easily and still hasn’t found her full balance and strength. She doesn’t get up like other kids her age and doesn’t run.
“We have to follow her posture when sitting and we are always attentive to everything. An extra tiredness, a difficult breath or a pain in the leg already requires greater attention from us”, says Kayra.
Later that year, Kyara will start her regular school life. She spent a year participating in the Early Stimulation — preventive care for children who have some type of physical or cognitive disability, who were born prematurely or who have some developmental delay. The program is offered by the Department of Education of the Federal District.
living the present
Kayra reports that today her family is happy to see that, soon, the diagnosis of AME will be in the screening of the heel prick test and that, even with restrictions, Zolgensma will be provided by the Unified Health System (SUS) for children who meet the pre-established requirements.
Finally, Kyara Lis’ mother comments that she is the greatest proof of God’s love in the family’s life.
“She’s a joy, she’s aware of her limitations and always tries to find a ‘little way’ to include herself in the midst of other children. Kyara is always humble to ask for help to perform movements that she finds difficult, such as getting up, picking up objects from the floor, sitting on toys, etc ”, she concludes.
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