Amelia’s Story: Living Bravely with Nonketotic Hyperglycinemia (NKH)
- 2 days ago
- 2 min read
💜 Amelia’s Story
Amelia was never just a diagnosis. She is a little girl with a big heart, fighting quietly and bravely every single day. Amelia was born with a rare disease called Nonketotic Hyperglycinemia (NKH) — a condition that affects the brain and turns the simplest things we take for granted, like swallowing, sitting, or controlling her body, into daily challenges.
From her very first days, her life has been filled with hospital stays, tests, seizures, and medical equipment. She went into a coma for 20 days — one of the hardest periods of our lives.
We lived between fear and hope, waiting for any sign that she was still fighting… and she was. Amelia also has partial agenesis of the corpus callosum, which makes communication between the two sides of her brain more difficult and adds to the challenges she faces.
She needed a feeding tube when she could no longer swallow. She cried intensely when it was not inserted properly. As a mother, the hardest thing is seeing your child in pain and feeling helpless in that moment.
But Amelia is not just her suffering.
She is a soft smile despite exhaustion.
She is a look filled with meaning.
She is a small soul teaching us patience and strength every single day.
Our journey with NKH is not easy. It is seizures, medications, special nutrition, constant anxiety, and endless medical appointments. But it is also unbreakable love, unwavering hope, and faith that every extra day with her is a blessing.
We are not asking for pity. We are asking for awareness, support, and a better future for Amelia and for every child living with NKH. Amelia Nonketotic Hyperglycinemia story
💙 Alone we are rare. 💛 Together we are strong.
—Lila Harmali, Mom, Caregiver, Advocate
Rare Connections Caregiver Support Group - open to ALL rare disease caregivers
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