Hi! We are the Belt family, Samuel, Theresa, and our five children, Lily, Jason, Lucy, Joseph, and Jacob. The younger three have various special needs. Our two oldest, Lily and Jason, were born with minimal complications and live normal, healthy lives, but Lucy, our third child, was born completely deaf. We didn't suspect it until her 12-month checkup, when her pediatrician asked us how many words she said, and we realized she'd never said any words. We knew she'd inherited Waardenburg Syndrome when she was born, due to a white forelock in her hair. Hearing loss is probable with Waardenburg Syndrome. Samuel (the dad) and several of his relatives all have it, and many of them have partial hearing loss, but none so much that they consider themselves deaf. The nurse who had performed Lucy's newborn hearing screening tried three times to get a normal (pass) result. She explained that fluid in the ears could interfere, so when the first two attempts failed, she tried a third time and gave her a pass, so we thought her hearing was fine, but the test was a false pass. So when we realized at her 12-month checkup, that she didn't use any words, though she was a normal baby in all other ways, we began wondering about her hearing. We took her to a local audiologist for a hearing booth test. Because the audiologist lacked experience with babies and toddlers, he too gave her hearing a pass. Her pediatrician was happy with this and we didn't pursue it further until her 15-month checkup. After we explained that she still wasn't saying anything, her pediatrician referred us to Early Intervention. Testing Lucy in many areas of development, Early Intervention concluded that she was on track in all areas except language and communication. We took Lucy to UCLA (a university hospital in Los Angeles, California), a three hour drive from home, where a pediatric audiologist performed a hearing-booth test with Lucy. The results were inconclusive, so we scheduled her for an Auditory Brainstem Response (ABR) test. The ABR test sends signals through the ears and measures the brain's response. Finally, it was conclusive that Lucy had absolutely no hearing. Though we'd suspected significant hearing loss, this result still surprised us. Theresa (the mom) had learned some sign language in college, but the prospect of Lucy thriving in our isolated California home town was dismal. We found a deaf school in Ogden Utah that appeared reputable, and decided we would make her a student there. Samuel (the dad) quickly found a new job in that area, taking a 10% pay cut, and a few months after Lucy's diagnosis, we left our California home and moved to South Ogden, Utah. We started working with Early Intervention at Utah Schools for the Deaf and the Blind (USDB) in Ogden Utah. We wanted Lucy to have every opportunity to thrive, both in the hearing community and the Deaf community, so in addition to learning American Sign Language (ASL) and attending a Deaf branch of our church, we wanted to get her cochlear implants. The cost of cochlear implants seemed daunting, but a friend of ours, a successful millionaire, promised us training to become successful millionaires ourselves, so we could do and have everything we wanted in life. Looking back now, we realize that we never should have given into that promise. Paying tens of thousands of dollars to learn how to make millions is great for some, but the entrepreneurial spirit is not one we possess, and the investment has since become a massive debt. Inflation, recession, and other financial conditions have put greater and greater pressure upon us for four years, and another three to four years is expected to get us out of the financial strain we're in, assuming things don't continue to get worse. Meanwhile, we've been unable to contribute to our retirement or save for our children's higher education. We did get Lucy cochlear implants and enrolled her in both ASL and "hearing and spoken language" preschool at the deaf school. Since then, she's made her choice to be without cochlear implants and thrive with ASL. She just finished Kindergarten. In the early days of the COVID-19 pandemic, we gave birth to our fourth child, Joseph, born with Spina Bifida (an improperly fused spine and malformed brain stem) and a leakage from his brain. For almost five months he was in the Neonatal Intensive Care Unit (NICU) at Primary Children's Hospital in Salt Lake City, Utah. We were just about ready to bring him home when it was discovered that he had a cleft palate and severe sleep apnea. As a result, he was dependent on a ventilator and a feeding tube (which he'd been on since he was born, but now we knew why). In order to survive, it was necessary for him to get a tracheostomy, meaning a hole was cut into his neck through which he breathes; and a g-tube, a feeding tube inserted through his belly directly into his stomach through which he receives his nutrients. Once he was stable with his trach and g-tube, he was moved to a hospital in Bountiful, Utah, closer to home. We visited him there often and were trained in how to take care of him. Finally, when he was 8-1/2 months old, we were able to bring him home. Since then, he's had several other surgeries and we continue to make regular visits to Primary Children's Hospital for doctor appointments. He is no longer dependent on a ventilator, and can eat pureed foods on his own, but he still has the trach and gets all liquids through his g-tube. He is now three years old, and is about to start at a preschool for children with special needs. In order to ensure our son's well-being, in the midst of the COVID-19 pandemic and housing craze, we moved house from our split level home to a single level home with basement. With that move, our mortgage increased by over $1,000 per month, but it's a perfect home for him and the rest of our family. A couple months after moving house, the immense debts we owed to pay our millionaire friend and medical bills was getting overwhelming, but we wanted to avoid bankruptcy, so instead we hired a law group to settle our non-medical debts for us. They've been very helpful, but we continue to pay toward those settlements, and the original monthly payment has increased from almost $600 to about $700, which we struggle to meet every month. In 2024, the whole family were in a rollover car accident that we were blessed to all walk away from without serious injury, but our new car payment is $300 more per month than our old car, and our insurance premium has increased by over $100 per month. In 2024, we gave birth to our fifth and last child, a boy named Jacob, also born with Spina Bifida, a brain leakage, and a clubbed foot. Luckily he breathes and swallows well on his own, and has neither a trach nor a g-tube. Still, with the additional medical expenses for surgery and clubbed foot correction, finances are becoming more overwhelming. We've had some help from our church and other charitable gifts, but money is still tight. We want to save for our children's higher education, be able to take our children to Disneyland and other fun places, take care of our home with proper pest control so it doesn't fall apart (mice have been a recurring problem and there's risk of termites). We want to improve our credit, which we could do easily if we could just pay off our outstanding debts including medical. We could then refinance our home and car payments to be much more manageable, and ensure our children with special needs are able to thrive for years to come. In short, we're asking for your help. Any financial donation will help. We love to help others where we can and will gladly pay it forward for years to come. Share this with your neighbors and friends. Thank you and God bless.
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