Beyond Cystic Fibrosis: Aniyah’s Story of Courage, Sass, and Hope

The first time I met Aniyah was at an ice cream shop, where we all became quick friends, especially Aniyah with Moxie. Her mom did tell me later that she was a bit confused and thought the Moxie plushie we gave her was her service dog! She told her told "I can't believe I got a tiny service dog. I thought it would be real, but I love this one too." Since that day, Aniyah that Moxie plushie with her pretty much everywhere she goes—especially to medical appointments—as her "temporary service dog" until she gets her own real service dog, which she now knows is coming.

Aniyah was all smiles with quite the infectious laugh. It was obvious from the start that she was a fighter, someone with a resilient spirit. Aniyah is so much more than her diagnosis she is a fashionable, hilarious, kind, and artistic six year old. A perfect swirl of sweet and sass, her quick-wit and charm keeps her four brothers and parents on their toes and laughing every single day.

Aniyah spent the first 108 days of her life in the NICU struggling with a primary diagnosis of Cystic Fibrosis.  Her homecoming came with isolation instructions -- her family often joked that they isolated before isolating was cool.

It quickly became apparent that there was more than CF going on.  After two rounds of full panel genetic testing, Aniyah was diagnosed with a newly discovered genetic disorder-- CASZ1 related disorder.   It came with new rounds of specialists and testing.  Hard appointments that have more questions than answers.  Prognosis for CASZ1 is currently unknown.  

In addition to rare and ultra rare genetic diagnoses, Amiya is also diagnosed with CPTSD, developmental trauma, and severe anxiety disorder.  A significant burden for anyone. She works hard in five weekly therapies plus all the extra appointments her diagnoses bring.

Aniyah's journey is marked by her incredible courage, strength, and style, even on her toughest days. Despite facing numerous challenges, she inspires those around her with her bravery, infectious laughter, and exceptional fashion sense, particularly her love for bows. A service dog could provide invaluable support, offering comfort and assistance, especially during medical care. This companionship would be transformative, granting Aniyah the opportunity to embrace her childhood and enjoy life as every child should. With the right support, she can continue to shine brightly and inspire others with her resilience and spirit.

hardest days. Facing challenges Aniyah inspires with courage, laughter, and an exceptional fashion sense, particularly her love for bows. A service dog who could support, offset, and neutralize especially during medical care would be life-changing and life-giving to a little girl who just wants desperately to be a kid.

If you would like to help Aniyah receive full funding for her service dog, please consider making a donation by clicking here. We will be sharing details about our main fundraising event at the beginning of next year, so stay tuned for updates! Your support is greatly appreciated!

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