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With the due date fast approaching, it's now a race against time to raise funds for arguably the most expensive drug in the world. Baby Ayah Lundt desperately needs to raise Sh270,000,000 to purchase the drug, Zolgensma to treat her spinal condition, which is deteriorating with every day passing.
Born of a Kenyan mother, Mary Mithika, and Danish dad Frank Lundit, Ayah was diagnosed with spinal muscular atrophy (SMA) in 2020 when she was only nine months. SMA is a rare genetic disease that affects the central nervous system, voluntary skeletal muscle movement, and the peripheral nervous system that connects it to the rest of the body.
Family, friends, personalities, and well-wishers of the family have so far managed to raise Sh208,000,000, which is 81.5% of the sum total.
"We are so close with only 19.5% remaining, but this is the time we need all the help in funding the remaining amount in order to save Ayah'," says Tony Nzomo, who resides in Denmark and is part of the committee that is helping in creating awareness to raise funds.
The family has now developed a strategic plan to beat the remaining figure by arranging a physical body movement fund's run dubbed 'the last milestone.’
"This is the last stretch driven by a race against time as, Ayah's condition is worsening as day's go by. It has reached to a point where her hands are now trembling uncontrollably because her motor neurons are getting consumed fast and they are irreplaceable even after medication once consumed," says Esther 'Shiko,' a friend to the family.
The family has now planned the run that targets 19,000 participants from across the globe, each participant contributing Sh2,500.
"We desperately appeal to finish the race by raising the remaining 60 million throughout the month so that she can get the drug. Treatment will not be possible without 100% of the full amount raised," she said.
The money goes straight into the baby Ayah Mithika medical fund foundation, where it can be accounted for any contribution made. Once the target is reached, it will be transferred to Boston's children's hospital to purchase the drug dosage.
"We are absolutely grateful for the help we have received from citizens globally, but in the spirit of Kenya as a running nation, we are appealing for more help to meet the cost and put this matter to rest. We are looking to have personalities, athletes and all well-wishers run, walk, ride with us to raise the remaining amount in order to save her bubbly soul," Tony said while speaking to the Standard.
Currently, football internationals Andreas Iniesta, Ayub Masika, Divock Origi, and Victor Wanyama have so far put their autographed jerseys up for auction to help raise funds for Ayah.
"It's all hands on deck. We are not leaving anything to chance and we hope to raise the amount even as we are approaching the Olympics opening. We are requesting for the final appeal as we head to the Olympics to have that Kenyan spirit of running to sprint, walk or ride, basically just to move with us on the final stretch in saving Ayah's life."
The amount can be paid via credit card, but organizers who know that not everyone has access to the card are appealing for friends to sponsor each other.
"You can sponsor a friend or colleague with no access to a credit card by paying for them and reconciling the figure. To raise the amount, the pay bill number for Ayah is 8030789 with the account name being Ayah, with the urgency of the situation, any amount at this point will do us just fine," Shiko added.
"We have decided to expand the fundraiser into a virtual realm where individuals can form teams to walk, run or ride for a whole month to facilitate her recovery. This can be found on the website jmvirtualraces.com which encompasses the App to raise her funds where we hope to beat the July 31st deadline. Treatment will not be possible without the to last coin to the full amount," she adds.
The currently overstretched family has put all their assets for sale in a desperate move to raise the amount and are requesting for the well-wishers, government officials, celebrities, and other stakeholders to join in and help.
"Its a desperate appeal but we believe this far we have come, we are hopeful to get the full amount," Nzomo pleaded.
