COTA for Mighty Noah Needs a Flood of Support!
Noah is a sweet, funny, almost seven-year-old who has a very different life than most seven-year-olds. He loves Legos and Superheroes. He is especially into Spider-Man at the moment. He attends school when able, but prefers to stay home most of the time. He spends free time playing with cousins, as his adventures are still limited due to germs and medication times. Due to a heart transplant and related issues, Noah is currently on 17 medications. Many are twice daily and formulated to go into his feeding tube, which is life sustaining for Noah.
Ever since Noah’s heart failure at 7 weeks and the heart transplant he received at the age of 12 weeks, people have asked if there was anything they could do to help. Until now Noah’s parents, Susan and Mat Harvey, have always answered that people could pray. Even when they were encouraged to launch fund-raising efforts, Mat and Susan trusted they would be fine because they had insurance, and since they both worked they thought they could handle any of Noah’s medical expenses that insurance wouldn’t cover. However, due to a long and losing battle with the insurance company, they now realize they need financial help to give Noah a chance to live. They had thought Noah’s biggest hurdle was surviving the transplant and strenuous standard transplant protocol that must be followed. Now it has become apparent that the biggest challenge and struggles they have faced is with the insurance company.
In 2014, when Noah was hospitalized for malnutrition, their insurance refused to cover the formula he needed for months and still refuses to pay for the vitamins he needs for survival. Things most people get out of eating food Noah’s body will not keep because of a genetic issue that affects his muscles and is linked to Mitochondrial disease. As the insurance company has paid less and less, the Harveys have had to pay more and more. The Harveys currently pay $450-$550 a month for Noah’s 7 medications not covered by insurance. This, along with the deductible and other uncovered expenses, has brought their out-of-pocket costs to more than $10,000 a year.
Recently, the situation took a sharp turn for the worse when the insurance company sent the Harveys a letter in November 2018 stating the insurance company will no longer cover Noah’s heart immunosuppressant unless he first fails at using the generic version of the drug (aka, step therapy). In his history below, you will read that there are only two heart immunosuppressant drugs available, and Noah has severe adverse reactions to both. Those adverse reactions force the doctors to keep a very delicate balance, carefully adjusting prescriptions to keep Noah’s heart from going into rejection. Therefore, the generic drug is something Noah’s medical team at Riley hospital vehemently denies is a suitable alternative. The Harveys and Riley Hospital have exhausted every possible appeal. Both have reached out to the drug programs, lawyers, SSI, Medicaid, Children’s and co-pay card companies in efforts of finding coverage. His medical team has even threatened to hospitalize Noah during this drug conversion process. Coverage is still denied. Noah’s medical team strongly advises NOT switching to the generic drug the insurance company demands for Noah, because they don’t believe he’s stable enough to survive the change.
The cost of the immunosuppressant drugs the insurance company will no longer cover varies (due to market value and his prescription dosage) from hundreds of dollars to a few thousand dollars. At some point another transplant will be needed as well, since the average transplanted heart lasts ten years. It has become clear that the Harveys need financial assistance to help Noah survive. Personnel at Riley hospital familiar with this situation have directed the Harveys to The Children’s Organ Transplant Association (COTA), which helps children and young adults in life-saving transplant situations by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of patients helps meet transplant-related expenses. COTA’s services are free to families, and gifts to COTA are tax deductible to the fullest extent of the law. Every gift given through COTA in honor of Noah will go through COTA’s accountability procedures, which assures donors that the donations are used appropriately.
The Harveys are firm believers in God. They know He has been there every step of the way and believe He will continue to guide them through Noah’s journey. Our goal in sharing Noah’s story is broadly for prayers and awareness. In honor of Noah and his family, we are also asking for financial support through COTA to assist with transplant-related expenses, such as those not covered by insurance. Since the stress of caring for a sick child is a lot for any family to handle; the additional burden of ever-increasing medical expenses becomes a crushing dilemma. Therefore we are asking that you help us rally around Noah by donating to COTA in honor of “Mighty Noah H.” Any gift will be sincerely appreciated. Please also consider sharing this site with others. If you would be interested in hosting a fundraiser for COTA in honor of Noah, please let us know.
Finally, please pray for Noah. Besides praying that the financial needs will be met, pray that God will direct and enable the doctors and Noah’s parents in all the decisions and medical procedures he faces. Also pray for Noah’s heart to be healthy. A donor heart lasts an average of 10-14 years, so pray that Noah’s heart would continue to function for many years.
Noah’s Heart Story (by Susan Harvey)
Noah came into this world on April 30, 2012, with his twin sister Madison. They arrived in emergency style as mom and Madison were in distress due to preeclampsia. Being born at 34 weeks and 5 days gestation wasn’t terrible for twins, but we were told to prepare for the worst and that they were probably not going to cry and would need immediate care upon birth. However, Noah came out eyes wide open and screaming; sister did too. Though they never needed oxygen they did require NICU care for several weeks. During that time the main issue preventing Noah from coming home was Bradycardia. Due to this, we elected to buy a heart monitor when we took him home, so we would know if there were any problems.
We were home an entire week with no problems. Noah was eating and becoming more alert each day. Suddenly his alarm sounded, and he continued to have more episodes each day. Visually we couldn’t identify any distress. After two appointments and 17 calls to his pediatrician with no answers, we sought answers elsewhere. On Monday, Noah met his new doctor, who instantly saw him struggling in breathing and recommended an urgent appointment with Riley Hospital. That night everything changed forever. Noah stopped eating and would fuss anytime I tried to lay him down, so I held him all night in my arms. In the early morning, on June 19, 2012, his breathing became more labored. As I reached for the phone to call the doctor, they were ringing me to ensure I had scheduled a Riley appointment. I explained what was happening, and they said to come right away. As I got his twin and myself ready, I finally laid Noah down on the bed. I saw him go limp. I grabbed him and ran out the door.
At the pediatrician’s office Noah’s condition worsened. Someone called 911 for a LifeLine ambulance. All this time everyone thought we were dealing with a lung issue, so we were sent to IU. At IU things turned grave: Noah lost his pulse, and doctors made quick decisions. Again, a LifeLine Ambulance was called, and Noah was urgently transferred to Riley Hospital. I knew Noah’s condition was terrible because the doctor rode with Noah to the next hospital. Thankfully it was only five minutes or so away, but as I drove in my own car, I was so frantic I still got lost twice.
Once at Riley Hospital, Mat and I were ushered to the dreaded private room. Physicians explained that Noah was being placed on a life support device called ECMO as we spoke and there was no time to waste. He was the 748th child ever to need the machine. His heart function was at 7%, and they frankly couldn’t believe he was alive. Noah had cardiomyopathy, and his heart was so damaged it would never heal on its own. He needed a transplant. We decided to move forward, only to be met with transplant denial. No one knew why Noah’s heart had failed, which disqualified him from receiving a new one until a process of elimination occurred. To get approval for a transplant, Noah underwent a very risky muscle biopsy and testing for Mitochondrial disease. As time was running out on ECMO, we eventually got the negative results we were hoping for regarding Mitochondrial disease. After this Noah was finally approved for a transplant, and the wait for a heart began. I still remember getting the page at work, rushing over to the shop where Mat works and yelling above the shop noise, “We have a heart for Noah!” Everyone within hearing distance cheered! What an amazing answer to prayer! What a gift of life! Noah survived the transplant on July 23, 2012.
Noah’s Complex Journey
Initially, Noah did well post-transplant. The first year was a blur. Isolation was difficult, but friends and family got us through it. Between his first and second birthday many people started to meet Noah for the first time. Noah was a very happy and giggling baby. Many remember the unusual way he would scoot around.
Noah started acting abnormally around September 2014. I instantly got him into his pediatrician, and within a couple of days, Noah was in an emergency spinal tap with the risk of needing a brain shunt. He’d had an adverse reaction to his heart immunosuppressant drug, which causes a pseudotumor in the brain (when your mind thinks there is a tumor, but there is not). It also caused excess spinal fluid to build up and create an Optic Nerve Edema, almost severing his left optic nerve, which would result in blindness. During attempts to treat this issue and save his sight, Noah’s body chemistry turned very acidotic. Since that time his relationship with food has altered. Noah stopped eating, and by September 2015 he was utterly malnourished; medical intervention was required via permanent feeding tube. Physicians recommend he no longer take that particular immunosuppressant or many classes of steroids that can cause the same reaction.
Noah’s battle with nutrition continued to progress as no formula food would continue to be effective. I can’t even remember now how many different foods we have tried. I know more than eight, and this was when the battle with insurance began. He would continue to gain, only to lose. We struggled with keeping the feeding tube on constant run vs. the bolas feeding schedule, mostly due to the thickness of this formula. During this time Noah severely struggled in the bathroom with several daily trips, which resulted in prolapse that required ER visits to replace his bowels. During this time we learned how to reverse his prolapse. In addition, a different feeding tube was inserted, allowing us to change it on our own at home every three months to decrease our hospital visits.
During this time Noah’s liver started to struggle, resulting in his gallbladder needing to be removed. His team discovered that the reason for this liver issue was another drug-induced injury caused by his heart immunosuppressant. However, there are no other options for heart coverage at this time. His team has reduced this medication to the lowest possible amount to keep his heart stable while slowing the progression of liver damage. Currently, there are no alternative drugs available for heart transplants.
In addition to the chronic skin infections Noah suffers from, the immunosuppressant he needs to survive makes him extra susceptible to the flu, colds and other common illnesses.
Noah has shown a significant delay in school. He has repeated Kindergarten and unfortunately is still lagging behind his peers. He underwent a Neuro-Psychological Evaluation, which gave us a diagnosis of Global Cognitive Delay. They explained his brain operates like that of a 4-year-old. As he grows older, he will continue to see an increasing gap (academically and socially) between him and those of his age. He also tested positive for a new marker test for Mitochondrial disease. We are overwhelmed by these test results, and so far have not made many decisions about them besides changing his formula and increasing medication to fall in line with mitochondrial patients. Please pray over our doctors, and us too, as we deal with these decisions in the future. Currently Noah’s care requires over 50 doctor and hospital visits each year.