Perla Portillo is a mom on a mission. Along with her husband, Jorge, the couple hosted an event in honor of their oldest daughter, Alanis. She is a beautiful 13 year old girl who has a rare, genetic disorder.
“We still don’t have a proper diagnosis for her after all these years, but we are hopeful. When Alanis was born, she was unable to see, hear, and was very weak. At her younge age of 1, she began to sit up, at 2 she began to crawl, at 4 1/2 she began to walk. She is still non verbal and we are hoping that her voice will come soon. She is a blessing to us and brings joy to us all. Since day one, we have been her voice and support and will continue to do so for her and all who are affected by these rare and genetic diseases,” says Perla about her and husband, Jorge. “Just like her progress has been slow but sure, so has the medical field been in finding answers for Alanis and children like her. Jorge and I have been advocates for Alanis and rare disease Since day one. “
This year, for World Rare Disease Day, Perla organize a luncheon that became a great success.
“I was a bit nervous about the whole event, I didn’t know if I would even have anyone show up, or if I would even raise any money. We had so many families show up to lend their support,” says Perla with great relief. “The event was on Saturday, February 27th, at Red O of Newport Beach. We had a silent auction that included several great items.”
Winning items included:
- A day of golf for 4 people at Pelican Hill Golf Club.
- Red O donated a $100 gift card, a signed cook book by Rick Bayles, Tequila, and other items.
- Soul Cycle of Newport Beach donated a 5 session Spinning class, a cute tote bag and two tea shirts.
- Equinox gym donated a month pass to their gym.
- Piato healthy meals donated a week food delivery.
- Jeanni Champagne boutique donated a cute basket filled with a $50 gift card to their shop, $50 gift card to mustards cafe, denim shorts, scarf, brallete, tank top, champagne, & champagne glasses.
- We also had Amoderm Wellness Center donate 8 signature gold facials each valued at $120. Each that we used for a raffle.
- Sarah Jebreil DDS from Newport Beach donated a teeth whitening service that we also used for our raffle. along with swag bags that were also used for our raffle.
Every guest also went home with a thank you bag from Global Genes.
Flowers were donated by Newport Florist as well as Tyler Gipe donated his photography service for the luncheon.
“Our objective was to bring our community together to bring awareness to Rare Disease. To stand together and support each other,” said Perla. “We have a wonderful community that cares about rare! This luncheon was also a fun time for parents and couples to have fun, have a great laugh, and to let people know that it’s okay to enjoy life, no matter what may come our way.”
Perla’s Newport luncheon was a great example of how parents and patients can plan events that can really get into the spirit of awareness, while making real change in the industry at the same time.