Dastan-e-Haris (SMA type 1)

My name is Hiba Tul Washia and I am from Virginia, United States. Dastan e Haris is my 19 months of niece who is suffering from Spinal Muscular Atrophy (SMA) type 1, her family has exhausted their resources in the management of the disease which is very costly. The children suffering from SMA don't survive longer than two years if not given medical assistance. The only chance Dastan e Haris has at life is the gene therapy called Zolgensma which costs 2.2 million dollars, the money required is well beyond the reach of the family. She has around five months left before she turns 2 years old and Zolgensma can be administered to kids till the age of 2 years. The raised funds will be spent on buying Zolgensma for Dastan and they will be wired to the family who is in dire need of the medicine to save their kid. I would also like to share the message of the family which is as following.

"Hello everyone,

We want to share the story of our precious 19-month-old daughter, Dastan-e-Haris. She has Spinal Muscular Atrophy(SMA Type-1), specifically Werdnig Hoffmann's disease, which is the most severe form of this condition. This rare genetic disorder affects her muscles and makes it hard for her to do simple things like breathing and swallowing.

Dastan-e-Haris has spent a lot of time in the hospital over the past year, with stays at Shifa International Hospital lasting more than a week each time. Emergency visits have become a regular part of our lives, reminding us of the tough battle we face against this illness.

Sadly, there's no cure for Dastan-e-Haris's condition. We're focused on managing her symptoms and dealing with the challenges that come with it. Her medical records are kept at Shifa International Hospital in Islamabad, Pakistan, and we're open to sharing them with anyone who wants to know more about her condition.

My wife used to work, but now she takes care of Dastan-e-Haris full-time. I work in a private construction firm to support our family.

We're an average middle-class family living in Islamabad, dealing with extraordinary challenges. We've turned a part of our home into a makeshift ICU to help Dastan-e-Haris. We have equipment like the Bi-pap Machine, Suction machine, Oxygen cylinders, and other devices to assist her.

Dastan-e-Haris needs a one-time gene therapy called Zolgensma, which costs 2.2 million dollars. We've already spent over 10 million Pakistani Rupees on hospital bills, setting up the makeshift ICU at home, and other expenses. We've had to take out loans to cover these costs.

We're asking for donations to help us afford Dastan-e-Haris's treatment. Zolgensma offers hope for her future, but time is running out as it needs to be given before she turns 2. Your support, in any form, will make a big difference in her life.

Despite the challenges, we hold onto our faith and believe that things will get better. Your prayers, donations, and support are greatly appreciated and will help us through this difficult time.

Thank you for your kindness and compassion.

Best regards, Haris Tariq and Family"