Sh176m raised, 96m to go for baby Ayah to get lifesaving drug

For Kathure Mithika, a Kenyan mother living in Denmark, watching her 16-month-old baby grow is a nerve-wracking race against the clock. She needs more than Sh270 million to treat the baby’s rare disease.

The only way to find such a sum has been to publish her baby’s face on social media in a fundraising campaign that has united people of different races across the globe, who have donated millions.

At 10 months old, her daughter Ayah Lundt was diagnosed with spinal muscular atrophy (SMA), a genetic disease found in one in 10,000 children born worldwide.

In January, the family launched a fundraiser for the drug and treatment abroad on different platforms that have so far raised Sh176 million of the Sh270 million needed.

The race to get the funds has spanned continents. Kathure is from Kenya while her husband, Frank Lundt, is Danish. Friends and well-wishers from their respective countries have helped by organising fundraisers.

Speaking to the Nation from Denmark, Kathure said to help raise the funds, they launched a social media campaign called Friends of Little Ayah, where videos of her progress are shared. They have also created numerous platforms for donation, including GoFundMe and an M-Pesa till number.

“We have written to many organisations but haven’t got help, because most organisations do not help individuals but only larger groups. While the journey is hard, we are overwhelmed by people’s kindness, they have come out to help us from all over the world,” she added.

On social media platforms, the family shares Ayah’s progress almost every day.

On Wednesday, media personalities Felix Odiwuor aka Jalang'o and his co-host Kamene Goro raised Sh1,053,000 from Kenyans, while Mombasa Governor Hasan Joho pledged to give Sh500,000.

Last month, some Kenyan celebrities were among individuals who helped to raise Sh7.3 million for Ayah in a 24-hour Instagram marathon. The celebrities, led by comedian Eric Omondi, Dr Ofweneke, MC Jessy, Robert Burale, media personalities Betty Kyalo and Pinky Ghelani, among others, mobilised their fans to contribute towards the treatment of the ailing baby.

The celebrities individually hosted live sessions on their Instagram handles where they asked their supporters to support Ayah’s family.

“If we don’t become a part of this, she will not get help. The more Ayah grows older, the more the muscles deteriorate. We believe we hit the target we wanted to get as each of us was being given time to rally his or her supporters to contribute at least Sh100. So, if 4,000 people raised Sh100, that is Sh400,000,” said MC Jessy.

“Ayah is only days away from being 16 months and every day means she is losing some motor neurons that she will not recover, it's heart-breaking, but we are keeping on the fight and hopeful that she will get this one-time, potentially life-saving treatment before she turns two.”

The disease, if left untreated, kills nerve cells, wastes infant muscle, and makes swallowing and breathing difficult. As their muscles get worse, infants suffering from SMA develop finger tremors and a curved spine.

They can’t stand or walk on their own and most importantly, they cannot survive past childhood due to respiratory failure.

The family started noticing changes in Ayah when she suddenly could not lift her head while lying down, sit on her own, or clap as she previously did.

The drug used for the treatment of SMA is Zolgensma, a one-time gene therapy. At Sh270 million a dose, it is known as the “world's most expensive drug”.

Ayah's parents are raising money to get her treated in the United States, where Zolgensma was approved in 2019 for use on children under two. Ayah is required to go to the Boston Children's Hospital for treatment.

SMA is a progressive disease caused by a defective gene. The disease kills nerve cells and causes infants’ muscles to waste away, which can lead to difficulty swallowing or breathing.

There are three drugs in the market for SMA, all of which are new. Of the three, only Zolgensma has shown the best results since it is replacing the lost or missing gene.

“Of the three treatments, only Spinraza has been approved in Denmark where they live and Ayah has got four doses so far. However, after discussing with neurologists, doctors and family, we have been advised that Zolgensma will be optimal for her,” said her mother. 

Novartis, the manufactures of Zolgensma, launched a lottery-style programme to provide the treatment for free to SMA patients under age two. Ayah was not eligible for the lottery programme, because the company excludes patients from the European Union, since the European Medicines Agency (EMA) approved the drug.

The drug is considered a near-cure. Zolgensma is a one-time treatment known to improve the quality of life of the patients beyond what the other two drugs can do.

“As for the price, Zolgensma has been set up for Sh270 million ($2.1 million) and when we asked, we have been told that …. what it’s doing cannot compare with the price,” said Kathure. In the drug company’s own words, “it equates to giving someone a new life”.

Sh94 million is a huge amount of money remaining but if 192,000 people donate Sh500 each, Ayah will be on the next flight to Boston.

You can visit Little Ayah’s social media pages: Instagram, @little.ayah; Facebook, Help Little Ayah, to see her progress, learn more about SMA where her family interacts with people, and donate towards her medical expenses.

The family adds that a talented writer from has donated a book -- a behind-the-scenes look into Ayah’s life -- titled Ayah – An account, which is coming out soon, and will be available on Amazon.