About

Raya Sidoma

Was born with Recombiant 8 Syndrome and CHD.

Our sweet girl took her last breath at 20 months old. Raya was truly a miracle baby. Raya exhibited defying the odds and pure resilience. Raya was very well known in her local NICU and PICU. She changed lives and left her mark on the world. In honor of her resilience, love, courage, and strength, it is our calling and dedication to be a resource for children and families with similar experiences. We are committed to helping families experiencing financial hardship while their child is admitted in the NICU or PICU.

Did You Know....?

Some CHDs are diagnosed during pregnancy using a special type of ultrasound called a fetal echocardiogram.

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!

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© Copyright 2024 Resilient Raya Foundation

Resources

Contact

resilientraya@gmail.com

Mail Only:
7865 W Bell Rd #1097
Peoria, AZ 85382

Organization

501(c)(3)
EIN: 93-2542901

Developed & Managed by: M B Professional Services