A Rare Journey - Hunter Syndrome

11/09/2026

Today was Salahuddin’s 4th Elaprase infusion, and today was especially heartbreaking. He cried so much. Maybe he has started remembering the whole pattern now… every week, the vitals, the infusion, the same routine. He was so scared that he wouldn’t even let the nurses take his vitals. We had to wait until he fell asleep, and only then were the nurses able to take them and start his infusion.

There is something so painful about watching your child go through this every single week and seeing that fear in his eyes.

And what makes it even harder is knowing that while Elaprase is an important step for him, it does not fully support his brain. Yet, as his parents, we continue with complete dedication because we know we have to keep moving forward.

Our goal is to get Salahuddin to a CNS targeted treatment. We may not have the resources right now. We may not have a clear path. The hurdles are enormous, and sometimes the road ahead feels almost impossible.

But I think when it comes to their child, parents simply don’t have words like “impossible” or “no way” in their vocabulary.

We just keep going.
We keep fighting.
We keep hoping.

For Salahuddin. 🤍

Ya Allah, open the doors where we cannot see a way, and lead him to the treatment he truly needs. Ameen.
🤲🏻

01/09/2026

Some birthdays are not just milestones; they are celebrations of courage, strength, and hope. 💙

This year, we celebrated Salahuddin’s birthday with his brothers and cousins. We took him to a play area where they could simply be children together, playing, laughing and making beautiful memories.

He received so many presents, each one carefully chosen to bring him joy while also helping him learn, develop skills and explore the world around him. Seeing his little face light up with excitement was everything to us.

When we came home, our lounge was decorated with all his presents waiting for him. He was so excited to see the colourful gift papers and opened them one by one with the sweetest curiosity.

As parents, these are the moments we hold closest to our hearts.

Sometimes, our biggest wish is simply to see our child happy, learning, playing and making memories.

Life has given our little boy challenges no child should have to face, but we choose hope. We choose gratitude. We choose to believe in a beautiful tomorrow for him. 💙

Happy birthday, our brave little love.
Your parents will always be here, believing in you, cheering for you and loving you through every step of your journey.

31/08/2026

Some battles are fought quietly, in hospital rooms, through tears and tiny brave moments. 💙

He cried. He was scared. He just wanted to be held.

And then, exhausted from it all, he finally fell asleep—with a hand resting gently on his head, reminding him that he was never alone.

This is the part of his journey that people don’t always see.
The tears behind every smile.
The fear behind every brave little face.
And the love that stays through it all.

My brave boy, you are so deeply loved. 💙

28/08/2026

A Birthday. An Infusion. A Whole Year of Strength.

Last year, on his birthday, we were still waiting for his genetic testing results. We had no confirmed diagnosis and were living with fear, uncertainty, and unanswered questions.

I still remember his grandmother asking, “How are you going to celebrate his birthday?”

I paused and replied, “I don’t know what there is to celebrate this year.”

A year later, so much has changed.

We know his diagnosis and the battles he is facing. Today, on his birthday, he is receiving his life-saving infusion.

But this year, I know exactly what we are celebrating our son’s bravery, patience, strength, and courage through things no child should have to face.

Despite being in the hospital, his day was filled with love. The staff decorated his bed with balloons and brought muffins, candies, and chocolates. We also distributed goody bags to the children in daycare, making his birthday even more special. ❤️

Today, we celebrate another year of his life, strength, resilience, and hope.

May Allah grant you complete shifa, protect you from disease progression, and bless you with access to a CNS-targeted treatment whether gene therapy or AVLAYAH that can reach your brain and help you keep fighting.

May Allah open the right doors, ease every difficult step, and bless us with many more birthdays together.

Ameen. 🤲🏻

19/08/2026

💙 Supporting MPS Patients & Families

Living with MPS (Mucopolysaccharidosis) can bring a lot of questions — whether your family is navigating a new diagnosis, exploring treatment options, looking for specialized care, or simply trying to better understand what comes next.

At the Muenzer MPS Research & Treatment Center, patients and families are at the heart of what we do. Our multidisciplinary team is here to provide education, resources, and guidance to help families feel informed and supported throughout their MPS journey.

We encourage patients and families to connect with our team, ask questions, and learn more about the resources and specialized care available through the Muenzer MPS Center.

💻 Patient Connect Form:
https://unc.az1.qualtrics.com/jfe/form/SV_efkRtvbohN1EDAO

📧 Email: [email protected]
📞 Phone: 919-228-2432

No matter where you are in your MPS journey, our team is here to help you and your family along the way. 💙

17/08/2026

10/08/2026

Two boys. The same age. The same family. Two different generations.

On the left is Salahuddin at 3 years old.
On the right is his maternal uncle, also 3 years old.

Decades apart, yet the story remains painfully similar.

Decades later, we are still fighting for access to treatment.

First, we fought for access to Elaprase.
Now, we are fighting for access to CNS-targeted therapies that can address the neurological impact of Hunter Syndrome.

How many more generations will have to wait?

Rare diseases may be rare, but our children deserve access to every treatment and every breakthrough available. 🤍

05/08/2026

Behind every rare disease journey is a community of kind hearts.

This is our small tribute to everyone who stood beside Salahuddin through prayers, messages, guidance, encouragement, generosity, and unwavering support.

You reminded us that hope doesn’t always come through medicine. Sometimes, it comes through people.

From the bottom of our hearts, thank you for walking this journey with us. 🤍

23/07/2026

Infusion #1 | Elaprase 💜

Yesterday, Salahuddin received his very first Elaprase infusion.

It was an emotional roller coaster for us.

We were deeply grateful that this day had finally arrived, yet our hearts were filled with fear. We had countless questions racing through our minds, and somewhere in the background we were already thinking beyond Elaprase, hoping and praying for a future CNS-targeted treatment. But in that moment, none of those thoughts mattered more than Salahuddin.

We had to stay strong for him.

It was an overwhelming experience for him too. The hardest part was getting the IV line in. It took multiple attempts before they could finally secure the IV, and every prick brought more tears. Watching him cry while trying to comfort him was one of the hardest moments for us as parents.

Sitting still for hours was another challenge. Eventually, after all the stress, exhaustion, and tears, he fell asleep, and thankfully spent the remaining half of his infusion peacefully sleeping.

Alhamdulillah, the infusion went smoothly. He was sleepy afterwards, but there were no reactions or side effects, and for that we are incredibly thankful.

I couldn’t take many photos because my only focus was holding him, comforting him, and reminding him that he was safe.

Sharing the few moments we managed to capture from a day we’ll never forget.

One infusion down. A lifetime of hope, prayers, and determination still ahead. 💜🤲