My name is Asif, and I am Hira’s dad.

I never imagined I would write something like this. Our family is private. We carry our struggles quietly. But seeing our daughter battle her own body, day after day, and knowing that a treatment exists, staying quiet became impossible.

The only thing standing between Hira and that treatment is funding.

This is Hira’s story. This is our fight. And this is our ask – to help Hira get the treatment she needs before it’s too late. Because together, we can change her future.

What We Are Asking For

Every dollar goes directly to the research that can stop Hira’s disease and give her a chance at a full life.

Please donate today and share this page with family and friends. Without community funding, this treatment will not exist in time to save Hira.

Meet Hira: The Girl Kissed by an Angel

Hira was born in the first week of August 2018, a healthy baby girl with a smile that filled every room. She is the youngest of three sisters, and she arrived with a small heart-shaped birthmark just above her forehead.

We told her she was kissed by an angel. She loved that. She still does.

That birthmark tells you everything about who Hira is. She cares for everyone around her and she is loved by everyone immensely. She has won awards at school every year – for honesty, for caring, for respect, and for academic achievement. Her teachers love her and she makes friends wherever she goes.

And every single day, with that same determination, she negotiates with a body that fights against her.

Hira cannot walk, cannot stand independently, cannot roll over in bed, cannot eat solid food, and cannot perform any act of self-care without help. Every movement requires a decision – how much energy will this take? Can I make it through? Then she prepares for the next battle. And she fights every single one!

When her cousins run and jump at family gatherings, she cheers for them. And then, quietly, she says: “I wish I could walk.”

Hira is full of joy, full of love, and full of fight. She just needs her body to cooperate and catch up with her spirit. By donating to Hira’s treatment, you are choosing to fight alongside her.

Hira's Journey: From Missed Milestones to a Diagnosis of SPG54

Hira’s first months looked completely normal. None of the doctors raised any concerns. There were no red flags at wellness check visits. But at around six months, her legs seemed unusually stiff and her feet stretched downward. It was a family visitor who first said the words out loud: “Is she handicapped?” The question landed like a punch.

Getting her first pediatric appointment took weeks of follow-up and when the pediatrician finally saw Hira, he confirmed she had missed multiple milestones. He ordered an MRI and genetic testing. An initial diagnosis of cerebral palsy was given while we waited.

The genetic testing was significantly delayed by COVID. When the results came, Hira was diagnosed with SPG54 – an ultra-rare neurodegenerative disorder.

SPG54 is caused by a mutation in the DDHD2 gene. Without this gene working, lipids accumulate in the brain and destroy the neurons that control movement, speech, and overall body function. The result is a progressive disease that does not pause or plateau on its own.

What followed was years of struggle for answers. And at every turn, we received the same response: manage the symptoms and continue to monitor.

A neurologist appointment in late 2025 delivered the harshest words that we will never forget. He said: “Why are you here? Her condition has no cure. She will degrade as she grows. She will expire.”

The Treatment and Why We Need Your Support

It became clear that the medical system was never looking for a cure. It was managing a decline.

After that devastating neurologist appointment, I spent many sleepless nights searching for anything that could help Hira. That search led me to Terry Pirovolakis and his son Michael, who was diagnosed with SPG50, a disease closely related to SPG54.

Terry worked with leading researchers and doctors to develop a gene therapy treatment for Michael. After receiving the treatment at Toronto’s SickKids Hospital, Michael’s progression stopped. And since then, multiple children have received the same treatment and all of them are showing improvement, some regaining functions they had lost.

When we found out about Michael, we felt like our prayers were answered. This was not a theory or a distant hope anymore. It is already happening for families who found the resources to make it possible.

The SPG50 gene therapy is the proven precedent for Hira's treatment, documented at Toronto's SickKids Hospital and published in Nature Medicine. Our $4 million goal follows the same research pathway, led by the same scientists who worked on Michael's gene therapy – Dr. Steven Gray at UT Southwestern Medical Center. His team is working with Dr. Jonathan Rios at the Scottish Rite for Children, actively building the research and treatment for SPG54.

We Are Racing Against Time

As Hira turns eight years old, we are starting to see some signs of progression in her condition. Hira has fought for every milestone she ever reached and now SPG54 is taking them away from her.

We are not going to let that happen. Every step of this journey has been an uphill battle. But Hira is not ready to give up and neither are we. We are asking you to fight alongside her.

We found this path to treatment ourselves and now we are fighting against time. SPG54 is a progressive disorder that does not wait. The window to intervene with gene therapy is not open forever. The earlier we fund, the sooner Hira has a chance at a treatment while it can still make the greatest difference.

Rare diseases like SPG54 are ignored by pharmaceutical companies because the patient population is too small to be profitable. No company is pursuing this. No government program is funding it.

That means if a cure is going to exist for Hira, it will only exist because of people like you.

Your donation is not symbolic. It directly funds Hira's treatment. And once developed, this treatment will be available to every child diagnosed with SPG54 anywhere in the world. You are not just funding one cure. You are ending a diagnosis that currently tells families there is nothing they can do.

The Roadmap to Hira's Treatment

We are following the same pathway that produced Michael’s SPG50 gene therapy treatment.

We know that running multiple phases in parallel rather than one after another can significantly compress the timeline. We are asking for your support to help fund phases concurrently wherever possible so Hira gets the treatment before it’s too late.

Phase 1 (NOW) – Generate SPG54 model; characterize disease; test gene therapy vectors

Phase 2 – Manufacture clinical-grade gene therapy drug

Phase 3 – Toxicology & final safety studies

Phase 4 – Apply for FDA & Health Canada approval for clinical trials

Phase 5 – Begin Hira's clinical trial

How You Can Help Today

We are at $16,000 of our $500,000 milestone.

When we reach this first milestone, the next phase of research and testing begins immediately. Every dollar closes that gap. Every day matters.

1. Donate now. Any amount. Every contribution goes directly to Hira’s treatment.

2. Share. Add one sentence: “I know this family. This is real.” One share can reach that one person who changes the trajectory of Hira’s future.

3. Spread the word. Share Hira’s story in your local communities, groups, and your personal and professional networks.

4. Follow and share updates. Use #HopeForHira and #CureForHira. Every share creates a new opportunity and hope for Hira.

We fought for Hira at every step of this journey. We knocked on every door until we found the one that opened onto a real path to a cure. That door is open. The scientists are ready. The research is moving.

We are now knocking on your door and we need your support to save Hira.

With gratitude and hope,

Hira and her family

Additional Information

Michael's SPG50 gene therapy as the proven precedent for Hira's treatment: