Update: A New Hope for Kubra Khan’s Gene Therapy Journey

Exciting Developments in Kubra's Fight Against SMA Type 1

We are thrilled to share a promising update in baby Kubra Khan’s journey to fight Spinal Muscular Atrophy (SMA) Type 1. Dr. Lim, a renowned specialist from Columbia Asia Hospital in Malaysia, has reviewed Kubra's case with immense dedication. He has provided us with a critical lead that could pave the way for her life-saving gene therapy.

Dr. Lim has recommended immediate action:

1. Travel to Malaysia on December 8, 2024, where specialized blood tests will be conducted.

2. Following the tests, travel to Indonesia by December 10, 2024, to administer the gene therapy.

Urgent Need for Support To make this journey possible; we urgently need £5000.00 GBP to cover:

• • Travel expenses to Malaysia and Indonesia

• • Hotel accommodation during the stay

• • Hospital and test charges

This development brings renewed hope, but the timeline is tight. Your immediate support can ensure Kubra receives the care she desperately needs to survive and thrive

A Family Friend’s Plea: Help Save Baby Kubra Khan

My name is Muhammad Azher, and I have the privilege of being a close family friend of Muhammad Shoaib Hussain Khan. We’ve known each other since childhood, and I have always admired Shoaib’s kindness, humility, and dedication to his family. Today, I am stepping forward to help him during the most challenging time of his life.

Kubra’s Story: A Miracle and a Tragedy :

On June 21, 2024, Shoaib and his wife, Nida Shoaib, welcomed their miracle baby, Kubra Khan, into the world. Her arrival was nothing short of a blessing, as she was born after ten years of prayers and waiting.

Kubra was a vibrant and healthy baby for the first month of her life, but everything changed when she developed severe health issues. Initially dismissed as weakness, her symptoms escalated, and by October 2024, Kubra’s condition had worsened drastically. She was admitted to the hospital with pneumonia, and further tests revealed a diagnosis that no parent is ever prepared to hear: Spinal Muscular Atrophy (SMA) Type 1.

The Battle for Kubra’s Life

SMA Type 1 is a devastating genetic disorder that affects a child’s muscles, making it difficult to move, swallow, and even breathe. Without treatment, the disease is fatal.

The only hope for Kubra is Zolgensma, a groundbreaking gene therapy that can halt the progression of SMA. However, this life-saving treatment comes with a price tag of $2.5 million USD (approximately 68 Crore PKR). It must be administered before Kubra’s second birthday.

In addition, Kubra will require lifelong medication—Risdiplam (Evrysdi)—which costs 1.15 million PKR per bottle ($4,000 USD) and needs to be given every two months. The medication will be required more frequently as Kubra grows.

A Father’s Courage, A Friend’s Appeal

I have known Shoaib since childhood, and I can say with certainty that he is one of the most dedicated and loving people I’ve ever met. He and his wife, Nida, have done everything in their power to save their daughter. They’ve sold their belongings, exhausted their savings, and sought help from every possible source.

In their search for hope, they connected with Dr. Salman Kirmani, a renowned genetic disorder specialist at Aga Khan University Hospital, Karachi. Dr. Salman has confirmed that Zolgensma is Kubra’s best chance for survival, but the cost is beyond anything the family can manage alone.

How You Can Help

Kubra’s life depends on the generosity of people like you. Your donations will directly go toward:

Zolgensma Gene Therapy: $2.5 million USD (one-time treatment)

Risdiplam (Evrysdi): $4,000 USD every two months for lifelong care

Therapeutic Equipment and Long-term Medical Support

No contribution is too small. Every dollar brings us closer to saving Kubra’s life and giving her a chance to grow, thrive, and experience the joys of childhood.

Why Your Help Matters

Kubra is more than just a baby fighting a rare disease—she is the hope and light of her parents’ lives. She is the miracle they waited a decade to hold. Her laughter, her bright eyes, and her tiny hands clutching at life are a testament to her will to survive.

Helping Kubra means giving her the chance to live, love, and grow into the incredible person she is meant to be.

Join Us in Saving Kubra

As someone who has known Shoaib since childhood, I can attest to his strength and determination. But this battle is one they cannot fight alone. Please join me in supporting this beautiful family by:

Donating—Every contribution makes a difference.

Sharing Kubra’s Story - Spread the word to help us reach more people.

Praying for Kubra—Your prayers give strength to her parents and hope for her recovery.

Contact Information

Fundraiser Name: Muhammad Azher

Relation to Kubra: Family Friend of Muhammad Shoaib Hussain Khan (friends since childhood)

Verification: All medical records and documents are available upon request.

Let’s come together to save Kubra and give her the life she deserves. Your kindness and generosity will not only save a life but restore faith in humanity.

Cost Breakdown for Kubra Khan’s SMA Type 1 Treatment

1. Zolgensma Gene Therapy: $2.5 Million USD

• Purpose: Zolgensma is a one-time gene therapy that addresses the root cause of SMA by replacing the defective or missing SMN1 gene.

• Cost: Approx. $2,500,000 USD (or equivalent in local currency).

• This includes the treatment administration and related hospital charges.

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2. Long-term Medications: $24,000 USD Annually

• Risdiplam (Evrysdi): This oral medication helps manage symptoms and prevents the progression of SMA.

Cost: $4,000 USD per bottle (required every two months initially; frequency increases as Kubra grows).

How Your Contributions Will Help:

1. Provide Kubra with the life-saving Zolgensma treatment.

2. Ensure access to medications and therapies to improve her quality of life.

3. Support her family with travel, accommodation, and logistical challenges during this critical time.

4. Cover long-term care to manage her condition effectively.

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By breaking down the costs, we aim to build trust and show that every donation—big or small—makes a tangible difference in giving Kubra a chance at life.

Let me know if you’d like this tailored further!

With hope and gratitude,

Muhammad Azher