The disease wasting away my baby

When Baby Ayah Lundt was born on January 15, 2020, she was a perfectly healthy baby, weighing about 3.7kg. Her parents were overjoyed to have yet another addition to their family.

As parents, they imagined all the endless possibilities that lay ahead of their lovely child’s life. But battling a rare condition was not one of them.

At six months, Baby Ayah, who loved to smile and play with her elder sister, was hitting her milestones, which included properly supporting her head and sitting up.

Things were going well and she would often be positively reviewed by nurses at home during the normal clinic sessions as per the Denmark health regulations.

“She was very bubbly and could even spoon-feed herself, and with support, could hoist herself to a sitting position,” says Kathure Mithika, Ayah’s mother, via a phone interview with EVE Magazine.

But things quickly took a turn for the worse when, at nine months, Kathure noticed little Ayah had stopped growing. Instead, she was losing her earlier growth milestones.

“Suddenly, the things she could comfortably do before were becoming a challenge.

“She could no longer support her head, stand or even feed herself. The child, who once was very playful and happy, suddenly became quiet and withdrawn,” Kathure says.

On seeking medical attention, Ayah was diagnosed with a rare condition known as Spinal Muscular Atrophy (SMA).

This condition affects only one in 10,000 live births. SMA is caused by a gene defect brought about by a mutation. It affects muscles, causing them to grow weak.

SMA is an inherited neuromuscular disorder that causes degeneration of motor neurons in the spinal cord and lower brain stem. This results in severe and progressive wasting away of muscles and weakness. “Prior to this, we had never heard of SMA,” says Kathure, a resident of Denmark.

And so she got to researching. She would soon learn that her child would progressively lose basic motor functions and that the more the treatment delayed, the more she would deteriorate.

“Patients lose the ability to swallow, breathe and eventually die. To stop the progression, Ayah, who turned one last January, needs a dose of world’s most expensive drug - Zolgensma. The drug costs an estimate Sh270 million, and it was needed before she turns two to save her life.”

Zolgensma is a new one-time gene therapy treatment for children aged below two. It replaces the missing gene with a new, working copy. This drug is not approved in Denmark, and so her parents have sought treatment in the US.

“In the meantime, to manage Ayah’s condition, doctors in Denmark have prescribed a dose of a drug called Spinraza, a prescription drug administered as a spinal injection throughout a patient’s life. The first session was difficult because my baby was in so much pain and it broke my heart... She cried a lot and could not sleep thereafter,” Kathure says, adding that the second session was much better.

The treatment is meant to help manage Ayah’s condition until she is able to access Zolgensma.

“Zolgensma is not a cure though. It does not reverse the damage that has already been done, but it will stop her little body from deteriorating further... We are racing against time to find her this medicine and help preserve the motor function she has left.

In a bid to raise the Sh270 million, Ayah’s parents have launched a global fundraiser with the help of friends and family in Kenya and Denmark and by yesterday they had raised slightly above Sh137 million.

“We have already made arrangements with Boston Children’s Hospital in USA, where we shall take her to get this treatment,” she says.

Ayah is now 14-months-old and though she can’t walk, or sit for more than 20 minutes, there is light at the end of the tunnel. This is the reason her mother has opted to make use of those minutes to feed her.

“I can’t wait for my little girl to get her treatment. For now, we remain hopeful,” she says, voice cracking.

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