💖 Our Little Warrior: Born with Noonan Syndrome 💖

Orissa’s Story

Hello everyone,

Thank you for visiting our page. This is a story about someone very small but incredibly strong — our beautiful daughter, Orissa. She was born in 2022 with a rare genetic condition called Noonan syndrome, and while her journey has been filled with challenges, it’s also been full of love, resilience, and hope.

What is Noonan Syndrome?

Noonan syndrome is a genetic disorder that affects around 1 in 1,000 to 1 in 2,500 births. It can impact many parts of the body, including the heart, growth, learning, and facial features. Every child with Noonan syndrome is different, but common challenges include heart defects, feeding difficulties, delayed development, and more frequent hospital visits than most families would ever expect.

For us, this diagnosis came with more questions than answers. It’s a condition few people know about — and we certainly had never heard of it before.

Orissa’s Journey So Far

From the moment she arrived, Orissa showed us what strength truly means. She spent her first three weeks in ICU surrounded by wires, beeping machines, and the most incredible medical team we could have hoped for. She has faced many challenges but through it all, she’s smiled, she’s fought, and she’s grown in ways we never could have imagined.

Noonan syndrome may shape part of her journey, but she is so much more than her diagnosis.

Why We’re Fundraising

We’ve set up this page to raise awareness of Noonan syndrome and to support vital research, family support networks, and care that makes such a difference in the lives of children like Orissa.

All funds raised will go directly to Noonan Syndrome Association, helping families access expert care, emotional support, and hope for the future.

If you feel that you are able to donate, any monies would be greatly received.