“She means more to me than I can express. I run out of words when it comes to communicating what I feel for my daughter. She is my princess, and seeing her grow up healthy and happy is all I hope for today.”
My name is Akilahmad Sheikh. I have a 4-year-old daughter, Maheen. She is the heart of our family. Being the youngest daughter, she is dearly loved by everyone in the house. All of us had dreams for Maheen: her first day at school, her first walk, we wanted to experience it all. But what we never wanted to see was Maheen being so unwell that her very first step without support would remain a distant dream for us as parents.
Maheen’s muscles are too weak, and physiotherapy has become part of her routine.
The reason? Spinal Muscular Atrophy type 2.
SMA is a rare condition that severely affects a child’s muscles, slowly taking away their ability to breathe and move freely. It is a neuromuscular disorder that causes progressive muscle weakness and atrophy due to the loss of motor neurons in the spinal cord.
Maheen developed this condition when she was 3 years old. At the moment, she is at home and unable to walk independently. As per the doctor's advice, regular physiotherapy sessions are ongoing to maintain her mobility and strength.
When she sees other children her age, she gives me quiet looks. Maheen doesn’t understand why this is happening to her. We try to make her laugh and put in effort however we can, but we can’t escape the fact that we won’t be able to take her pain away, no matter what.
What is the cure for Maheen’s condition?
Maheen is now being treated at home with risdiplam, an oral medication that helps slow the progression of SMA. However, as per reports from Topiwala National Medical College & B. Y. L. Nair Charitable Hospital, Mumbai, our little girl requires Spinraza, 7 vials for one year. This treatment is lengthy and expensive. My daughter needs your help to live a life where even little tasks, such as breathing and walking, don’t feel like a privilege to her.
How can you contribute to Maheen’s treatment?
To donate to Maheen’s treatment, visit ImpactGuru and make donations.
Share Maheen’s story with as many people as you can to help spread the word.
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महीनच्या उपचारासाठी तुम्ही कसे योगदान देऊ शकता?
महीनच्या उपचारासाठी देणगी देण्यासाठी, इम्पॅक्टगुरूला भेट द्या आणि देणगी द्या.
महीनची कहाणी जास्तीत जास्त लोकांसोबत शेअर करा आणि त्याचा प्रसार करण्यास मदत करा.
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.