Inara, born on 7th September 2023, bravely battles Spinal Muscular Atrophy (SMA)—a rare and critical genetic disorder.
SMA causes the degeneration of motor neurons in the spinal cord, leading to severe muscle weakness and progressive loss of movement.
Inara suffers from breathing difficulties and extremely limited mobility due to this condition.
Before SMA weakens her body further and causes irreversible damage, Inara urgently needs treatment with Risdiplam, a life-sustaining muscle-strengthening therapy that can slow the progression of this disease.
To give our daughter a fighting chance at life, my husband and I have started a crowdfunding campaign to afford Risdiplam, the only treatment currently available to help preserve Inara’s muscle function—something we cannot manage alone.
Your generous support can help us provide the treatment Inara desperately needs in her fight against SMA.
Nikath’s plea to save her daughter
As I hold my precious Inara in my arms, I am overwhelmed by emotions I cannot fully put into words. Her innocent eyes look up at me, unaware of the storm raging inside her fragile body. She entered our lives like a ray of sunshine—our hope, our joy, our everything.
But fate had other plans.
Our world shattered the day we heard the words Spinal Muscular Atrophy. In a moment, the dreams my husband and I had lovingly built for our daughter came crashing down.
Inara Today
As days turn into sleepless nights, I watch helplessly as SMA tightens its grip on my baby.
Her gentle smiles are slowly disappearing, replaced by pain and struggle.
- Every breath she takes is a challenge
- Every movement demands enormous effort
- Her once-cheerful baby laughter has turned into heart-breaking cries
Twice in 2024, Inara had to be hospitalized at Induja Hospital—
from September 20 to 30, and again from October 16 to 19—
as her tiny body fought battles no child should ever have to face.
Each hospital stay chips away at my heart, reminding me how fragile her life truly is.
Our Only Hope
There is still hope—for Inara and for us.
Risdiplam is a disease-modifying, muscle-strengthening treatment that helps increase the levels of the SMN protein her body desperately lacks. By preserving motor neurons, Risdiplam can slow the progression of SMA, helping Inara maintain her breathing strength and muscle function for as long as possible.
SMA is a progressive disease, and without continuous treatment, Inara’s condition will worsen with time. Risdiplam must be given regularly to protect the muscles she still has.
The Monumental Challenge Ahead
The cost of lifelong treatment is overwhelming for a middle-class family like ours.
My husband works in a private company, and despite our best efforts, we simply cannot bear this burden alone.
And time is not on our side.
With trembling hearts and desperate hope, we have turned to crowdfunding—because giving up is not an option when it comes to our child.
Every day is a fight. Every night is filled with fear.
The thought of losing our little girl is unbearable.
A Humble Request
The only strength we have left is your kindness.
Every donation, every share, every prayer brings Inara closer to the treatment she needs. Without your support, we cannot continue this fight.
Please stand with us.
Please help save our daughter.
Please help Inara live. 💔🙏
The goal amount of the campaign may be higher than the attached estimates to address and aid the post-hospitalization expenses/contingencies including but not limited to prolonged medication, diagnostics, rehabilitation therapies, and follow-up doctor visits/consultations which vary from disease to disease.
