kanoa open heart This fundraiser has been established for my nine-year old grandson Kanoa James Jordan. Kanoa is a boy with special needs, the result of a bout of rheumatic fever as a one-year-old who was not properly treated at the time. Shortly after his illness, he became non-verbal with a diagnosis of sensory sensitivity and apraxia. No connection was made at the time with the rheumatic fever. The brain and heart are intimately connected but no follow up was done to examine his cardiac system. Kanoa is a fun-loving, affectionate little boy, who enjoys playing games, building Legos, watching movies and, most of all, running and playing with other children. Kanoa loves being active with big sister Naia (ten) and his baby brother, Brandon (two). He has two older half siblings who lived with him when he was younger. Their Mom, Denise, is a single parent suffering from disabilities. They live in a small town in Montana, where access to health care and childhood services is scarce. Kanoa’s dad, Donald, is involved in helping with getting proper treatment and care for him. Kanoa has always loved to run and play, but last year he lost interest in both activities and complained of being tired all the time, preferring to rest than to play. A visit to a specialist in Missoula, 50 miles away, in 2019 finally confirmed that he had developed severe damage to the aortic heart valve and an enlarged heart due to the rheumatic fever. While he was given antibiotics for the fever, the pediatrician failed to do the follow up treatment that prevents the all too common damage to both heart and brain caused by rheumatic fever. Without the surgery to replace the defective valve, Kanoa will not live long. His condition has worsened since his diagnosis in September 2019. In June 2020, Kanoa was evaluated at Seattle Children’s Hospital where they recommended insertion of a mechanical valve. In children a mechanical valve is problematic and makes their future far more challenging. Mechanical valves don’t grow as the child’s heart grows and may need replacement. They require life-long blood thinners which have their own complications, including internal bleeding from accidental bumps. The life span for children with mechanical valves is much shorter and has more complications. Rejecting the option of a mechanical valve, Denise sought a consultation with one of the few surgeons in the U.S. who might be able to do a repair of the valve. She had heard surgeries like this were being done at Stanford. The staff at Stanford’s Lucile Packard Children’s Hospital in Palo Alto, California were very helpful and encouraging. After looking up at Kanoa’s tests, Dr. Kasuhide Maeda assured his Mom that he might be able to repair the damaged valve and, failing that, use tissue from Kanoa’s body to build a new valve, with the new Ozaki procedure. This new method involves crafting a new heart valve from the patient's tissues, an improvement over implanting artificial heart valves made of metal, or bioprosthetic valves made from the tissue of cows or pigs. Only a handful of pediatric thoracic surgeons in the United States can perform the necessary life-saving surgery. This miracle procedure could assure that Kanoa will grow up, the valve will grow with him and he can expect a normal adulthood and relatively long life. Dr. Maeda will do the open-heart surgery on September 16, before he transfers his practice to Philadelphia, Pennsylvania in October. The medical costs for surgery and hospitalization are supposed to be provided by Montana’s Medicaid for Children. However, getting to Palo Alto is an economic challenge for the family. Medicaid will only provide no more than a $300 reimbursement after their return to Montana for round-trip travel and expenses. This amount does not even begin to provide sufficient funds for travel, housing accommodations and necessary expenses for the duration of the treatment and recovery. It would be risky for Kanoa to fly in light of the Covid-19 pandemic, as his heart condition puts him at higher risk from exposure to the virus. So, mother and father and son, along with baby brother Brandon, will have to drive the 1,050 miles from their home to Palo Alto, a two-day journey at best. While Naia will stay with her paternal grandmother in Montana, Brandon will be cared for by me while Denise and Dannie wait the long hours at the hospital. The length of hospitalization is unpredictable, but the estimate by medical staff is one to two weeks post-surgery. Kanoa’s health problems have affected the whole family and they are now faced with additional financial burdens. Beyond the surgery, Kanoa will need follow up trips to the medical center and may someday need further surgery. With a repair or Ozaki procedure, his prognosis is promising. As you can imagine, this catastrophic event has turned their world upside down. The family is now faced with additional financial burdens and possible future medical interventions for Kanoa. This fundraiser has been established to help ease the burden on Kanoa’s family, so that they can focus all their efforts on Kanoa’s treatment, healing and spending precious time together. If we can help alleviate some of the day-to-day financial pressures that will mount during this time of critical care, we too will have done our part to support them in a time of sincere need. Anything you can afford will help towards our goal. I am a woman of faith and I believe and think My God will give my beautiful grandson a new start in life and a return to a normal childhood. It is with much gratitude that I thank you for your support. Joan Greco