Santi's Medical Fund: Your Support Matters

Dear Family, Friends, and Supporters,

Some of you know my son Santiago also known as Santi personally, while others may have come to know him through the videos I share online. I’d like to take a moment to share more about his journey and explain why we’re reaching out today.

Santiago has been diagnosed with several complex medical conditions, including Cerebral Palsy, a monoallelic mutation in the NALCN gene, CLIFAHDD syndrome, epilepsy, congenital hypertonia, periventricular leukomalacia, global developmental delay, non-verbal status, congenital heart disease, bilateral equinovarus (acquired foot deformity), and ptosis of the upper eyelids. Despite these challenges, Santi has shown incredible strength and resilience. He began intensive therapy at just five months old and continues to attend sessions four times a week.

Our goal is to help Santi achieve greater independence in his own body, whether on his own or with assistance. He has worked so hard to do things independently, but some of his diagnoses currently limit his ability to walk or stand. On June 16th, Santi will undergo a Botox procedure on both feet and ankles to help reduce his high muscle tone, which may enable him to stand more comfortably. If that isn’t effective, our next option would be spinal nerve surgery.

As Santi grows, his desire for mobility also increases. He now needs specialized equipment, including a wheelchair, a gait trainer, and a standard. On July 3rd, he is also scheduled for eye surgery to address his bilateral ptosis. While we are fortunate to have private insurance, it does not cover many of these essential items, and the co-pays are very high. We receive medical bills almost weekly, and although we’ve applied for a DD waiver, the approval process is lengthy.

That’s why we are humbly asking for your support. We’ve created a fundraiser through AngeLink to help cover the cost of Santi’s medical equipment, upcoming procedures, and ongoing care. Every contribution, no matter the size will make a meaningful difference in Santi’s life and help him continue to grow and explore the world more freely and independently.

May God bless each and every one of you who took the time to read Santi’s story. We understand that times are difficult, and if you’re unable to donate, you can still help us by sharing this link with others.

With heartfelt thanks,

The Ruiz Family