I wanted to write and thank ALL the team with Little Superheroes for their generosity for our twins. We have twin boys that were born at 26 weeks and have had medical challenges through out their lives. They are 3. One of them is disabled and the other has had a bad history of bowel obstructions and multiple surgeries. Between the two of them, we have spent nearly 2 of their 3 years with us at the hospital.
Not only have bills piled up, but with our son who is disabled, so have equipment costs. Many things he requires for me to care for him are deemed “not medically necessary” per insurance and they will not pay for it or the insurance companies say we will pay for XX but it has to be the equipment of our choice. Usually their choice is not custom to children with multiple needs. Our son, Jackson, who is disabled suffered from bilateral brain hemorrhaging with severe hydrocephalus in his second day of life. He was born too young and too fragile. The blood vessels in his brain were simply not developed enough and one burst damaging a great majority of his brain. Jackson will never walk. He cannot sit, but he can roll and army crawl to get almost anything he wants. His vision and hearing were also effect from the bleeding. He’s been diagnosed with Cerebral Palsy, epilepsy, Cortical Visual impairment and bilateral hearing loss. His speech is minimal; he can process words but the motor movement of saying them was an area of the destruction. He is a happy child, loves blowing kisses at anyone who crosses his path and loves playing ball with his daddy and siblings.
Our other twin, Nile, is what we call our “bowel baby”. He suffered a spontaneous bowel perforation just days after birth requiring a major operation that he wasn’t given great odds to survive. He spent the majority of his NICU stay recovering. The twins were in the NICU for 3.5 months and released the same day. At 18 months old, Nile suffered a bowel obstruction that was undiagnosed at local hospital. We life flighted him to Kansas City (our established hospital and where kids stayed in NICU) where he underwent an 8 hour surgery to save his life. His recovery was devastating. A once typical developing 18 month old was now a child who was IV fed 24/7, NG tube in his nose and an Ostomy. Life changed drastically for us. His bowel obstruction was untreated long enough that post surgery his small intestines went into intestinal failure. He remained in the hospital for 3.5 months and had three more surgeries. He was finally sent home with the IV feeds, NG and ostomy cares. He came home when I was 8.5 months pregnant with our daughter. Nile suffered a bowel obstruction the day our daughter was delivered. We planned to have our daughter in Kansas City so when I was not able to do Nile’s daily cares being in patient myself for delivery, his nurses at his hospital could. I’m thankful we were there and he was in the right hands. After our daughter was born, two hours later my husband left and took Nile to surgery. He remained with him and I with her until we could be reunited as a family in the hospital with our son. (Our son was at the Children’s hospital and I was at another). We remained in the hospital with our son for about one month and everyone was able to reunite at home. Since, Nile has not had an obstruction, and by the grace of God, has been able to wear all tubes and had his intestines put back together. He remains on simple medication to maintain his intestines and going the bathroom. He has come a long way.
During the time, Jackson has also required minor surgeries. Some for his eyes, leg muscles and next month a shunt will be placed in his brain to help drain his ventricles. It will be a major surgery; one that should have been done 1.5 years ago, but our neurosurgeon, at the time, didn’t notice the changes occurring.
So, how has Little Superheroes helped us, they donated money to us and that money has gone half toward medical bills and the other half toward some equipment that we have purchased for Jackson so he can get around and be safe while doing so. Many of the items we have had to purchase this past year and are still in the process of purchasing are: Wheelchair (insurance covered all but the deductible), Floor sitter for feeding and learning, a travel safe sleeping bed (pack n plays are too short), a wheelchair ramp for our home to get out of doors with him in equipment, Vision software that is geared toward children with CVI to help teach them how to see sponsored with one on one help with specialists in Kansas City, a speaking device that he can touch the screen and it will say words for him. These are just a few things that we have had to put money toward because insurance will not pay or have had/will be purchasing out of pocket.
Raising a child with disabilities is very challenging, but when there are opportunities out there who support our children, we appreciate it tremendously. It is difficult to say in words how appreciative we are and to express how even a little bit goes a long way. Saying thank you, just doesn’t seem enough.
–The Hunziker Family