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About us

Meet Raya

From the very beginning, Raya was a miracle baby. In utero, her NIPT results came back consistent with Trisomy 8, a genetic syndrome that is considered fatal within the first trimester. At 16 weeks, we found out that Raya had Congenital Heart Disease. Which is also known as CHD. Although all odds were against her, our brave little girl continued to fight and prove every medical professional wrong. Raya was born on July 27, 2021 and changed the world. Upon further requested genetic testing, we were educated on Raya’s genetic diagnosis. A few days before our discharge of being in the NICU for 26 days, we were told Raya actually had a genetic syndrome called Recombiant 8, also known as San Luis Valley syndrome.  She had a gtube surgery, 3 heart surgeries, one of them being open heart and 3 cath lab procedures. Raya loved miss Rachel and Disney. She refused to sleep in anything but bamboo pajamas. Although she was nonverbal, she was so beautifully intelligent. Raya lived her life to the fullest. She went to Disneyland, the beach, camping, pumpkin patches, and so much more.  She always refused to take “No” for an answer. A little before she turned 18 months old, she started all oral feeds and we were on the road to pulling out her gtube! Raya was an incredible little girl who was so loved by her family and medical team. Raya taught her providers how to critically think and she was an amazing little girl to learn from. At 20 months old, on April 1st, 2023 Raya went back home to be with Jesus. She is now free from all of her earth side illness! Her fearless, resilient, beautiful little soul has been guiding us and has given us the courage to create this beautiful foundation in honor of her!