HELP ZORAWAR — A LITTLE BOY FIGHTING A RARE DISEASE

A Little Boy. A Rare Disease. A Family Fighting for Hope.

Please take a moment to hear our precious Zorawar’s story.

On June 15, 2024, our beautiful baby boy, Zorawar, came into this world, bringing endless happiness, love, and hope into our family.

Like every family, we dreamed of watching him grow, hearing his laughter, celebrating his first steps, and seeing him experience all the beautiful moments childhood has to offer.

But our lives changed when we learned that Zorawar was living with an extremely rare genetic disorder called Aromatic L-amino Acid Decarboxylase (AADC) deficiency.

WHAT IS AADC DEFICIENCY?

AADC deficiency is a rare and serious genetic disorder that affects the nervous system and the body’s ability to produce important chemical messengers.

Children affected by this condition can experience severe difficulties with movement, muscle control, feeding, sleep, and development.

The ordinary childhood milestones that many families celebrate can become enormous challenges.

As Zorawar’s family, all we want is to give him every possible opportunity to live a healthier, happier life.

THERE IS HOPE — KEBILIDI GENE THERAPY

In November 2024, the United States Food and Drug Administration approved a gene therapy called Kebilidi for AADC deficiency.

For families like ours, this medical advancement represents hope.

While treatment requires specialist assessment and results cannot be guaranteed, we are fighting for Zorawar to have the opportunity to be evaluated for this therapy and receive it if he is eligible.

OUR FAMILY’S FIGHT FOR TREATMENT

We live in Ontario, Canada, where we have been seeking funding for Zorawar to access treatment outside the country.

Unfortunately, our requests for out-of-country treatment funding have repeatedly been denied.

We have approached doctors, government representatives, the Ontario Ministry of Health, and the Health Services Appeal and Review Board.

We have provided medical information, asked for guidance, and continued pursuing every possible avenue.

Despite our efforts, we are still searching for a way forward.

We are not asking for special treatment.

We are asking for a fair chance for our little boy.

WHY WE NEED YOUR HELP

We are starting this GoFundMe because we cannot navigate this journey alone.

We are raising funds to help Zorawar pursue specialist medical care and, if he is medically eligible, access gene therapy in the United States.

Donations may help with medical assessments, treatment-related expenses, travel, accommodation, transportation, and necessary follow-up care.

We will share updates as treatment arrangements and costs become clearer, including how donations are being used.

❤️ ZORAWAR IS MORE THAN HIS DIAGNOSIS

To us, Zorawar is not just a child living with a rare genetic disorder.

He is our beautiful little boy, our happiness, and a precious part of our family.

His smile means everything to us. Every moment we spend with him is a memory we treasure.

We dream of a future where Zorawar has the opportunity to experience more of the world around him, surrounded by love, care, and the support he deserves.

We cannot predict what treatment will mean for his future, but we will never stop advocating for him.

PLEASE HELP US GIVE ZORAWAR HOPE

If you are able to donate, any amount would mean so much to our family.

If you cannot donate, we kindly ask you to share Zorawar’s story with your friends, family, and community.

Every donation, every share, and every kind word helps us raise awareness and find support.

No family should have to face the challenges of a rare disease without hope.

Every child deserves a chance. Every story deserves to be heard.

Please stand with our little Zorawar.

From the bottom of our hearts, thank you for your kindness, compassion, prayers, and support.

With love and gratitude,

Zorawar’s Family

Instagram: @hopeforzorawar

Together, let’s give Zorawar’s story a voice.