9-year-old with rare disease spreads joy with viral videos
Viral videos of Hannah Strickland are helping raise awareness for cystinosis.
Hannah Strickland is only 9 years old, but her big personality is capturing hearts online.
Whether she's describing her ramen as having "a little hint of spiciness" or reacting with shock to flying first class, her joyful moments have racked up millions of views on social media.
But behind the viral videos is a serious diagnosis.
Hannah has cystinosis, a rare metabolic disease that affects approximately 1 in 100,000 to 200,000 live births worldwide, according to StatPearls, an online library published in the National Library of Medicine.
The disease can lead to a buildup of crystalized cystine, an amino acid, in various organs in the body, primarily affecting the kidneys and eyes, but can involve any organ system. It can result in elevated blood pressure, an enlarged liver or spleen, hypothyroidism, hypogonadism, or diabetes, according to StatPearls. It can also cause difficulty walking and swallowing, vision impairment, hypopigmentation, premature skin aging, dehydration, vomiting, and stunted growth, depending on the age of onset and the type of cystinosis.
Treatment for cystinosis can include a medication called Cysteamine, the only FDA-approved medication for cystine removal, aimed to lower cystine levels in the body and help control symptoms.
Other treatments include supportive care, depending on which organs are affected, such as hormone replacement therapy, nutrition support, speech and language therapy, and kidney transplantation. There is ongoing research to discover future therapies for the condition.
Hannah's older brother Joel also has the disease.
Their mother Dawn Strickland told ABC News' Danny New that it took two years to diagnose Joel -- an experience that helped her recognize the signs and find care for Hannah more quickly.
Over the years, Strickland has documented the family's journey online, sharing both the highs and the challenges.
"We have bad moments and bad days -- I did with my son as well," she said.
Now, the family is turning that visibility into action, together.
They recently launched the Strickland Hope Foundation, a nonprofit aimed at supporting families and caregivers navigating serious medical conditions.
The foundation is raising money through initiatives like selling shirts featuring Hannah's viral quotes, including her now-signature "little hint of spiciness."
Speaking to the family's combined efforts to draw attention to the disease, Strickland said, "If you have a healthy family unit, you can serve the child better. It helps everybody."
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