“Kiara in some languages means bright or star, that is exactly what my baby girl is to me and my wife. When our little shooting star came into our lives, we could not be happier. She completes us.”- Manish Rawat, father.
“Every loved one gathered around me as I gave them the good news of my pregnancy.
From far and wide, our friends and family, all told me they already loved my sweet baby.”- Kiara’s mother.
Today our little star is facing a life-threatening condition.
The doctors have diagnosed Kiara with Spinal Muscular Atrophy.
Spinal Muscular Atrophy (SMA) type 1 is a rare and severe neuromuscular disease that affects infants within the first six months of life.
Type 1 is the most common and severe form of SMA. It's sometimes called Werdnig-Hoffmann disease or infantile-onset SMA.
As I hold my baby girl in my arms, I cry and watch her twinkling eyes looking at me.
My daughter is only 1 years 4 months old but has been suffering from SMA for 5 months. Her tiny body struggled to sit or breathe. My heart aches every single day for her.
Kiara's body is not functioning properly, she can barely have any movements.
The symptoms that she will face further on make me worry about her tiny body. All I wish for is for her pain to disappear.
Kiara’s doctors told us, “Symptoms include severe muscle weakness, limited movement, and difficulty breathing, feeding, and swallowing. Other symptoms include a weak cry, limited head control, and a bell-shaped chest. Facial muscle weakness develops later on.”
I cannot imagine what my baby is going through. How much longer will she have to suffer? What can I do to help her? Where do we find people who care? Every single one of these thoughts kept me up at night.
A cure awaits….
The doctors told me that the only way my baby would be alright is if a treatment plan is devised and followed through.
“For her treatment, the following medication is required:
- Medication: Onasemnogene Abeparvovec-xioi
- Strength: 1 injection
- Quantity: 1 dose
- Duration: 1 dose will be needed.”- said the doctors at Sir Ganga Ram City Hospital, Pusa Road, Delhi.
All I can do now is wait patiently for my baby to receive this treatment.
The medication is life-saving but is not available in India. It costs us crores of rupees.
The doctors said to me, “It is recommended that this drug be imported and administered as soon as possible, as it works better when given early.”
We need you. Your contribution is a blessing that I know will help my baby to live.
How can you help Kiara?
Donate for Kiara to receive treatment
- By donating, you help ensure that Kiara receives immediate treatment which can save her life
Share her story with your family and friends.
- By sharing her story with your loved ones and friends, you help amplify her voice to those who care and are willing to donate.
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आप कियारा की कैसे मदद कर सकते हैं?
हमें आपकी आवश्यकता क्यों है: हर सेकंड मायने रखता है
कियारा को इलाज दिलाने के लिए दान करें
दान करके, आप यह सुनिश्चित करने में मदद करते हैं कि कियारा को तत्काल उपचार मिले जिससे उसकी जान बच सकती है
उसकी कहानी अपने परिवार और दोस्तों के साथ साझा करें।
अपने प्रियजनों और दोस्तों के साथ उसकी कहानी साझा करके, आप उन लोगों तक उसकी आवाज़ उठाने में मदद करते हैं जो उसकी परवाह करते हैं और दान करने के इच्छुक हैं।
Disclaimer -
SMA is a progressive disease that causes Kiara's muscles to weaken over time. To prevent further deterioration and slow the progression, Kiara urgently needs the drug Risdiplam to preserve muscle function only if it is prescribed by the doctor, While the fundraising for Zolgensma is underway, starting Risdiplam immediately is a critical step to safeguard the child’s life and preserve muscle function.
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.