14-month-old Kenyan needs the world’s most expensive drug to stay alive

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14-month-old Kenyan Aya Lundt was born healthy and achieved all stages of development as the months went by.

Her parents noticed that things had been off since she was nine, and now they are vying against time to raise more than $2 million to cover treatment for a rare degenerative disease that mostly affects children.

Baby Lundt was diagnosed with Spinal Muscular Atrophy Type 2 (SMA) in November 2020. SMA is a rare genetic disease that is present in 1 in 10,000 children worldwide and kills nerve cells and causes infant muscles to deteriorate.

It can lead to difficulty swallowing or breathing. Usually, children with spinal muscular atrophy do not survive early childhood due to respiratory failure.

However, Lundt’s parents hope that they will be able to obtain the one-time treatment Zolgensma. Gene therapy is approved for use in children before the age of two.

The baby’s mother, Mary Mythica, and her father, Frank Lundt, appear to need to raise money themselves to get treatment in the US as the drug was approved by the Food and Drug Administration in 2019 for use on children under the age of two.

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Also, since the property is not covered by universal healthcare in Denmark where they live, the Lundts turned to family, friends and social media to raise $ 2.1 million before their young daughter turns two.

“I think about the cost every day,” said Mithika, who is from Kenya, crying. “Then I look at Aya and see that she is getting worse. As a parent, what would you do if you knew there was something that could save your child?”

When Lundt was 9 years old, her parents noticed that she couldn’t eat, crawl, raise her head while sleeping, or clap her head like she used to. Mythica couldn’t wrap his head around what was happening to her 14-month-old who was now struggling to eat oatmeal with a spoon, something she had done so passionately before.

Because of these and many other troubling symptoms, talk to a nurse who visits the baby monthly. The nurse referred them to the doctor. Lundt was diagnosed with type 2 spinal muscular atrophy on November 27. And Mythika has realized the fact that her baby may never walk again even with treatment.

However, Lundt’s family has not given up hope of obtaining a rare gene therapy for their child and they are on the alert hoping they can raise money before her condition deteriorates.

Dave Lennon, president of Novartis Gene Therapy, told CNN that treatment and complete care for a patient with SMA “could cost up to $6 million in the patient’s first 10 years of life.”

The family managed to raise $60,000 via GoFundMe. Family and friends are also helping through the social media campaign “Friends of the Little Verse” launched by the child’s parents. Lundt, who has a two-year-old sister named Princess, currently uses a wheelchair to help get around.

“She’s like a four-month-old trapped in the body of a 14-month-old,” Mithika said. “She’s frustrated because she can’t move. When her older sister is dancing around, she tries to join her from the wheelchair but she can’t. Every patient is different. But just in the past few weeks, she’s deteriorated so badly.”

According to experts, a single dose of $ 2.1 million is not a foolproof treatment, but a powerful IV dose is one surefire way to preserve Lundt’s breathing, alter her gene expression and improve muscle function.

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