Reyhaneh's Childhood Is Changing. Her Mother's Love Never Will.
Reyhaneh was born healthy. But as she grew, a rare genetic disease began to change her life. Today, at 14, she faces the devastating effects of Cockayne syndrome.
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Reyhaneh's story
Her Story
Reyhaneh's early medical examinations showed no problems. But in 2018–2019, doctors discovered she had Cockayne syndrome, a rare genetic disorder that progressively affects growth, development and overall health.
Her mother has spent years consulting specialists and searching for solutions. Despite nutritional support, Reyhaneh struggles to gain weight.
A Mother's Love
“I fought for this child of mine. I gave up some of the best moments of my life for Reyhaneh.”
Behind Reyhaneh's journey is a mother who has sacrificed everything she could to give her daughter the best possible care.
Her Journey in Pictures
Growing Up With Cockayne Syndrome
Understanding Her Disease
Living with Cockayne syndrome
Cockayne syndrome is a rare, progressive genetic disorder affecting the body's ability to repair DNA damage.
It can cause severe growth difficulties, neurological deterioration, vision and hearing problems, and increasing physical disabilities.
There is currently no cure. Treatment focuses on managing symptoms and improving quality of life.
Help Reyhaneh Live With Dignity and Care
We cannot change her diagnosis, but together we can help provide the support and care she deserves.
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Swiss registered association
Leila's Friends Association is registered in the Swiss Commercial Register under identification number CH-501-6015569-5.
Frequently asked questions
Is my donation secure?
Yes. Payments are processed securely by Stripe. Your card details never reach our servers.
How will my donation help Reyhaneh?
Your donation supports Reyhaneh's care and quality of life. Support may be allocated according to the most urgent needs within her campaign.
Can I donate monthly?
Yes. Choose Monthly in the donation window to support Reyhaneh regularly. You can cancel at any time.
Is there a cure for Cockayne syndrome?
There is currently no cure. Treatment focuses on managing symptoms and improving quality of life.
Is there a fundraising target?
No confirmed target has been set. We display confirmed donations received, not estimated medical costs or future monthly commitments.