WATCH ABOVE: Na’ama Uzan, 5, loves her older brother Nadav so much that she has raised close to $50,000 by selling lemonade and baked goods. Nadav, now 7-years old, lives with a rare disorder called Angelman Syndrome and through Na’ama’s fundraising efforts, she hopes to find a cure.
TORONTO – Na’ama Uzan is only five years old, and she has raised nearly $50,000 to help find a cure for her brother.
Na’ama started selling lemonade a year ago to raise funds for research for her older brother, Nadav, who has a rare disorder called Angelman Syndrome.
Angelman Syndrome affects one in 15,000 live births. It is characterized by profound developmental delays, problems with motor coordination, balance, and epilepsy.
“Nadav is seven years old,” said Ru Uzan, Na’ama’s mother. “He has severe epilepsy that’s difficult to control and it creates a complex life for him.”
The love that Na’ama has for her brother is inspiring everyone who hears her story.
“We drove [to Toronto] today from Minden Hills, and we actually came with the sole purpose of seeing Na’ama and getting the chance to buy some lemonade from this very popular lemonade stand,” said Sue Tiffin, who has a two-year-old daughter with Angelman Syndrome. “The awareness that Na’ama is raising is incredible.”
Another family who also has a child with the disorder heard about Na’ama’s lemonade stand all the way from California, and was so inspired by Na’ama’s efforts that they donated more than $21,000 to the cause – adding to the $26,000 that Na’ama had already raised.
“That’s almost $50,000 that she’s raised,” said Uzan. “They opened a grant in her name – the Na’ama Uzan FAST Track Grant.”
The Foundation for Angelman Therapeutics (FAST) is completely volunteer-run, with every penny going directly to research.
“She’s now bringing hope to all of these families who can now see a story about Angelman on the Internet,” said Tiffin. “And now we have the chance for others to understand what our lives are like.”
Na’ama is driven by the love she has for her brother.
“It just never ends!”