My name is Nejla Abbed. I am a mother of three, sharing my story not only as a parent,
but as someone who has experienced both the promise and the failures of our
healthcare system.

Two of my children have an SDHD genetic mutation.

Although my children’s genetic risk was identified early, my daughter Jasmine was
repeatedly misdiagnosed at age 13 before doctors finally identified a
pheochromocytoma. This hormone-secreting tumor kept her body in a constant fight-or-
flight state, leading to severe anxiety and depression. She required out-of-state surgery
and later urgent mental health care, much of which we were forced to pay for ourselves
because it was not considered essential.

My son Kaiden was diagnosed with a tumor in his neck at age 10. By 17, he had
developed two additional tumors in his head and neck. Once again, we traveled out of
state to access specialized care. Despite multiple medical appeals, insurance denied
coverage for critical imaging, forcing us to pay out of pocket. Kaiden underwent high-
risk surgery that left him with lasting physical challenges and required me to become his
full-time caregiver for nearly a year. Today, my son is facing three new tumors – two in
his head and neck and one in his stomach.

For both of our children, our family lives with constant uncertainty, trauma, and fear of
what comes next.

Rare diseases affect nearly one in ten people, yet fewer than ten percent have an FDA-
approved treatment. Research funding is limited. Mental health care is often
inaccessible. Insurance systems repeatedly fail families navigating complex and chronic
conditions.

When I tell my story, it is not a request for pity, it is a plea for progress.
There is an urgent need for increased federal research funding for rare diseases,
including pheochromocytomas and paragangliomas, and for guaranteed, covered
access to mental health care for patients and families facing chronic and life-threatening
illness.

We are one family fighting rare disease, but our story is anything but rare. It reflects the
reality of thousands of families facing the same challenges. With action, we can change
this story.