Help Save Salahuddin — A 3.11 Years Old Fighting Hunter Syndrome (MPS II)

We are doing everything possible in Pakistan, but now we need help for the most critical step of our lives.

Our son Salahuddin is 3.11 years old, and every single day, we are in a desperate race against time to save the abilities he still has.

He is diagnosed with severe neuronopathic Hunter Syndrome (MPS II), a rare, progressive, and fatal genetic condition that attacks:

the brain

the heart

the bones and joints

hearing

growth and development

We know this terror all too well because we have lived it before. Salahuddin’s maternal uncle suffered from this exact same genetic monster. By the age of 8, he became completely bedridden and unconscious, and he tragically passed away at just 17. We carry that painful memory in our hearts every single day. We absolutely cannot let history repeat itself with our little boy. We have a narrow, unforgiving window of just 2 to 3 years before irreversible brain damage sets in forever.

⭐ The Brutal Financial and Emotional Toll in Pakistan

Fighting a rare disease from a developing nation like Pakistan means standing completely alone against an impossible wall. Sourcing Salahuddin's enzyme replacement medicine is a miracle in itself, and we are forever indebted to Kim Angel from IMPSN, Dr. Salman Kirmani at Aga Khan University Hospital, and Dr. Huma Cheema in Lahore, whose selfless help made it possible to access this treatment.

To start his infusions, we had to travel all the way to Lahore, where Dr. Huma Cheema administered his very first dose and provided a 3-month stock. But this cycle never stops. We have to travel back to Lahore every 3 months just to receive the next supply of medicine, and we must make this grueling Lahore trip again in just 6 weeks.

On top of travel, the local medical and financial burden is crushing us:

✔ Monthly Infusion Administration: Even though we arrange the medicine, the hospital administration and IV infusion fees at AKUH cost us roughly 80,000 PKR ($300) every single month.

✔ Ongoing Therapies: Salahuddin desperately needs continuous weekly occupational, speech, and behavioral therapies in Karachi to preserve his declining skills.

✔ Collapsing Salary: Because of endless hospital visits, out-of-town travel for medicine, and medical emergencies, my annual office leaves have completely run out. Every single month, my office makes heavy salary deductions. Some months I receive only 50 to 60 percent of my salary. Balancing a slashed income with mounting medical bills has pushed our family to the absolute breaking point.

⭐ The Heartbreaking Roadblocks We Have Faced

If you look at our journey, we have faced closed doors at every turn:

✔ The Suspended Trial: We were originally screening Salahuddin for the RGX-121 gene therapy trial at Saint Peter’s Hospital in New Jersey. Just before our physical evaluation could happen, the trial was abruptly suspended.

✔ The California Trip: Heartbroken, I traveled alone to California for the Project Alive Conference to find alternative options and meet international researchers.

✔ The Visa Rejection: We secured a critical appointment with Dr. Paul Harmatz at UCSF in San Francisco and applied for a U.S. medical visa for our entire family in Islamabad, but tragically, our visas were rejected.

⭐ The Final Ray of Hope (December 2026)

We refused to give up. We reached out to Dr. Joseph Muenzer, the world’s leading MPS II specialist at the UNC Muenzer Center in North Carolina. Seeing Salahuddin's critical timeline, Dr. Muenzer issued an official Letter of Medical Necessity.

Armed with this powerful letter, I reapplied for a visa on an emergency basis just for myself. Alhamdulillah, my U.S. Medical Visa has just been approved! Salahuddin already holds a valid 5-year multiple-entry visa. Unfortunately, the rest of our family still did not receive their visas. This means I will be making this terrifying, lonely journey completely alone with my little boy.

We are scheduled to travel to North Carolina on December 15th for a 3-week physical evaluation. This is our ultimate, last remaining chance to get him evaluated for upcoming life-saving, brain-penetrating clinical trials and to explore legal pathways to relocate our family to a medical system where his lifelong treatment is possible.

⭐ Why We Need Financial Support

Every trial suspension, every salary deduction, and every hospital bill has drained our savings down to zero. To make this decisive December trip possible and sustain his survival in Pakistan, we urgently need funds to cover:

Estimated Costs:

Flights (Father & Son) to North Carolina: ~$2,500

21 Days Accommodation & Living Costs near UNC Hospital: ~$2,500

Out-of-Pocket Medical Consults & Uninsured Lab Tests: ~$2,000

Upcoming Lahore Travel Expenses for the next 3-month medicine stock: ~$600

Ongoing Monthly Infusion Admin Costs (~$300/month) & Local Therapies in Pakistan: ~$800

We are working, saving, and doing everything in our ability, but the costs and salary deductions are too high for us alone.

⭐ How Your Support Will Help Salahuddin

Your donation will help us:

✔ Make the critical December trip to Dr. Muenzer at UNC North Carolina

✔ Cover travel, accommodation, and initial evaluation costs for father and son

✔ Cover upcoming Lahore travel expenses to secure his 3-month medicine stock

✔ Sustain his ongoing monthly infusion administration and local therapies in Pakistan

✔ Reduce our crushing financial stress so we can focus entirely on saving our child

⭐ Meet Salahuddin

⭐ Meet Salahuddin

Salahuddin loves:

✔ balloons

✔ swings

✔ running in open spaces

✔ music

✔ and being close to his mother

He is full of love and innocence. When I look into his eyes, I see a little boy who still wants to run, play, and whisper calling out to us. We just want to save the parts of him that the disease is trying to take away…

⭐ A Father’s Message

I never imagined writing a plea like this. No parent is prepared to fight a rare disease that takes something new from their child every month.

But we are not giving up. We are fighting with everything we have through trial suspensions, embassy rejections, salary cuts, hospital visits, and endless international consultations. All we need now is support to reach this final, life-saving step in North Carolina.

If you can donate — thank you.

If you can share — thank you.

If you can pray — thank you.

From one parent to another, help a broken father give Salahuddin a chance at life.