A Fresno girl battling a chronic disease is starting her own charity to raise awareness.
"We have to wear a lot of hats, long sleeves, lots of sun block and stay in the shade," said 10-year-old Sylvia Macias.
Sylvia can only be outside in the mornings and evenings. The rest of the day she's playing inside her home. The 10 year old has been battling lupus for about a month. The chronic autoimmune disease attacks her blood and organs.
"At first we were sad, we were very sad and angry," says Sylvia's Mom, Angelita Macias. "Why her? She's only 10 years old. She can't go out and play, she can't do anything."
However, Sylvia and her family are doing something. After learning there is not a lupus support group or foundation in the Central Valley, they started a charity called "Protecting Our Butterflies."
"We collect sun block and give it to the patients that have lupus. We're collecting sun block, because when you have lupus you can't be out in the sun a lot," Sylvia said.
She was invited to hold a bake sale during a fundraiser for her sister's softball team, the "Fresno Rage." In total, she raised $250 for a Lupus Foundation and she collected sunscreen.
"I got 20 so far," Sylvia said. "I hope I get more though."
The family is also trying to connect with other children who have lupus. Sylvia has found other kids battling the disease on Instagram. Her mom says it's important that Sylvia has a strong support system.
"I would love for here to meet other kids that are going through this, because only they know," Angelita said.
While Sylvia has a lot of support from friends and family, she has a long road ahead her. There isn't a cure for lupus, but there's treatment. Sylvia is on medication, including steroids, which is why her cheeks are swollen. She also has to undergo six rounds of chemotherapy.
If you would like to donate sunscreen to "Protecting Our Butterflies" you can email Angelita Macias at Angelita.Macias@yahoo.com or you can contact the family on their Instagram account @sylvia_lupus_fighter
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