1,000,000 reasons to donate 100kr each to a very worthy cause.
Text: Judy Wanjiku Jørgensen
Meet Ayah Lundt, a bright-eyed, cheerful one-year-old baby who lives in Bornholm with her family.
Ayah Lundt was born in January 2020, by many accounts a healthy child, until a diagnosis in November 2020 detected that she has Spinal Muscular Atrophy Type 2 (SMA type 2).
SMA is a rare genetic condition that affects one in 10,000 people worldwide. The condition is characterised by progressive muscle loss, to the point where a child cannot control her head or sit unassisted, and if left untreated, this disease can be fatal.
Since diagnosis here in Denmark, Ayah is on Spiranza, a drug that slows down SMA progression.
“The good news is, a recent medical breakthrough offers a one-time treatment in the form of Zolgensma, a Gene Replacement Therapy.”
The good news is, a recent medical breakthrough offers a one-time treatment in the form of Zolgensma, a Gene Replacement Therapy.
As with all treatments, the clock is ticking. Ayah needs to get Zolgensma treatment before she is two years old.
The challenge is that Zolgensma is the world’s most expensive drug, going at approximately 10,000,000 Danish kroner.
Undaunted by the mountain of this price tag, Ayah’s parents have launched a bold fundraising campaign to help raise funds and secure treatment for baby Ayah before it is too late.
If it takes a village to raise a child, baby Ayah needs the global community to rally behind her.
If it takes a village to raise a child, baby Ayah needs the global community to rally behind her.
If 1,000,000 people give 100 kroner, Ayah stands a chance at surviving into adulthood and live a healthy, fulfilling life.
Treatment for SMA with Zolegsma isn’t approved in Denmark yet due to the prohibiting cost. Fortunately, Ayah will be able to get the treatment in the USA, where it is currently available.
To donate, please visit @little.ayah Facebook page and follow if you want to know the latest updates on her condition. If you can’t donate and have a business, you can contribute a service or a percentage from your product sales or even connect the family with people that could help.