Our Inspiration | The Children's Rare Disorders Fund

The Children's Rare Disorders Fund_Domenico Sandhu

Following a dramatic series of seizures requiring hospitalization, Domenico Sandhu was diagnosed with a rare genetic disorder called FOXG1 Syndrome at 16 months old.

Domenico's doctors explained that his nonsense mutation of the FOXG1 gene meant he will never walk, talk, feed himself, or learn to sit up. They explained that both FOXG1 and his second diagnosis, epilepsy, will stay with him for life.

The doctors further explained there are no treatments or cures, and little hope for either.

This news to his parents was, of course, devastating.

Following a dramatic series of seizures requiring hospitalization, Domenico Sandhu was diagnosed with a rare genetic disorder called FOXG1 Syndrome, at 16 months old.

Domenico's doctors explained that his mutation of the FOXG1 gene meant he will never walk, talk, feed himself, or learn to sit up. They explained that both FOXG1 and his second diagnosis, Epilepsy, will stay with him for life.

The doctors further explained there are no treatments or cures, and little hope for either.

This news to his parents was, of course, devastating.

Parents Megan and Kamal decided they were going to create a different fate. To begin, they set out to learn everything they could about FOXG1 and the rare disorders space.

They were astounded to learn there are over 11,000 rare disorders worldwide, nearly all without a treatment or cure.

Unexpectedly, they came across institutions actively working on treatments for FOXG1. They also came across a few other rare disorders with similarities to FOXG1, almost all with parent-led charities.

It became all too clear that if a rare disease was to be solved, it was going to start with the parents. Nonetheless, hope for a cure was there.

The Children's Rare Disorders Fund_The Nolan Sandhu Family

This meant, however, that funding for these research projects also laid on the shoulders of the parents. FOXG1 Syndrome is a fairly newer discovery in the rare disorder space, and deep funding is needed.

Domenico's parents decided they needed to get involved. They would raise funds to support projects underway, as well as commission new projects not yet undertaken. And more still, they wanted to fund research not only for their son's disorder, but for as many rare disorders as their support could allow.

The Children's Rare Disorders Fund was born July 2022, just 3 months after Domenico's diagnosis.

Join us. Help us fund research to save countless lives. Donate or Get Involved today. Read more about our research here.

Unexpectedly, they came across institutions actively working on treatments for FOXG1. They also came across a few other rare disorders with similarities to FOXG1, almost all with parent-led charities.

It became all too clear that if a rare disease was to be solved, it was going to start with the parents. Nonetheless, hope for a cure was there.

This meant, however, that funding for these research projects also laid on the shoulders of the parents. FOXG1 Syndrome is a fairly newer discovery in the rare disorder space, and deep funding was needed.

Domenico's parents decided they needed to get involved. They would raise funds to support the projects underway, as well as commission new projects not yet undertaken. And more still, they wanted to fund treatment research not only for their son's disorder, but for as many rare disorders as their support could allow.

The Children's Rare Disorders Fund was born July 2022, just 3 months after Domenico's diagnosis.

Join us. Help us fund research to save countless lives. Donate or Get Involved today. Read more about our research here.

Meet Our Founding Family