Kaylee's BPAN Research Fund

My daughter, Kaylee, is 6 years old and an amazing, loving, happy little girl.  About a year ago, we received devasting news.  Kaylee was diagnosed with a very rare genetic disorder called BPAN, a subtype of NBIA (Neurodegeneration with Brain Iron Accumulation).

BPAN is caused by mutations in the gene WDR45, located on the  X chromosome and is not hereditary.  Only approx. 200 individuals worldwide have been diagnosed with this rare disease.

Affected individuals are developmentally delayed during childhood with slow motor and cognitive gains.  Most children are described as clumsy with an ataxic gait- unsteady, staggering movements while walking.  Some of the other symptoms are : seizures, dystonia & parkinsons, sleep disorders, tremors and stiffness, and blindness.  Symptoms get worse and start to degenerate around adolescent/early adulthood. 

Kaylee is developmentally delayed, currently non verbal, struggles with balance, and has seizures.  She is the light of my life and it breaks my heart that she will face uphill battles as she gets older.  She is the stongest and bravest person I know and I am determined to fight for her.

By sharing Kaylee's journey, I'm hoping to raise awareness and funding for BPAN research and help find
a cure for this terrible disease.  As of right now, there is NO TREATMENT or CURE

There are two amazing doctors (Dr. Susan Hayflick and Dr. Penelope Hogarth) at OHSU in Oregon who are at a standstill on research because the FDA turned down their grant for funding. 

I am reaching out to all my dear friends and family to help share Kaylee's journey and raise money for BPAN research.  Thank you for all your support!


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Clara Leong 
San Mateo, CA
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