February 1, 2018 – February is the month to celebrate love and hearts. Since 1964, February has been known as American Heart Month throughout the United States. For the Rogers family of Huntington Beach, California, February truly is a month to celebrate selfless gifts from the heart. Their son, Ian, is alive and able to celebrate Valentine’s Day this year because of the new heart he received 18 months ago … while their younger son, Micah, is being closely followed by the heart transplant team.
Jill and Randy Rogers are strong people with strong faith. Ian was born in February 2002, and Micah was born in November 2003. Life was exciting and hectic for this young family with two growing boys. However, their world turned upside down in October 2005. Micah, just one month shy of two-years-old, was diagnosed with a rare form of Muscular Dystrophy. That news was devastating. That next month, big brother Ian was also diagnosed with Fukuyama Muscular Dystrophy. Doubly devastating news.
Jill shared, “The diagnosis pulled the rug out from under us and every test was like a gut punch, followed by another jab. There is no cure. It is degenerative. It is progressive. We could not stop it. We had doctor appointments with every specialist.” Fukuyama Muscular Dystrophy is primarily seen in Japan. Children with this diagnosis do not make the Fukutin protein and therefore do not walk or talk, have impaired vision and cognition, and have a very compromised lifespan. Amazingly, Micah and Ian did not present like a textbook case of Fukuyama Muscular Dystrophy. They do not have the founder gene for this disease but have a mutation all their own. Prognosis is unknown, and all specialties are hoping they will be saved from these devastating results. By age 10 Ian knew he was special because he could still talk, walk and think. He knew he could speak up for his friends who were not as fortunate.
The family’s blog identifies 2007-2015 as the family’s Golden Years. Jill and Randy decided they did not want to mourn their losses, i.e. the boys’ diagnoses and a miscarriage. They did not want to miss out on the joy in the moment. “The boys are with us. They are gifted, talented and witty. They squabble like brothers. They earned their black belts, have become amazing musicians and have lots of faithful friends. We are closer as a family and a little wiser and more patient with each other … perhaps even more able to enjoy this fragile life.”
In 2009, a baby girl, Kaiya Rayne, was born to Jill and Randy as another sign of hope for this family. The Rogers Five spent the next several years simply being a family, but a family that continued to have numerous medical appointments, tests and unanswered questions. Their goal, however, was to live life and enjoy each other.
One thing Ian enjoyed was attending a church camp in Northern California, which he did during the last week of June 2015. Unknown to his parents, Ian experienced difficulty breathing and weakness. Despite being so uncomfortable, he did not want to leave camp early. On July 3rd when camp was over and the Rogers family was back together and visiting extended family in the area, Ian complained of shortness of breath and could not stop coughing. Jill heard ‘crackling’ in his chest. Jill and Randy rushed him to the local ER where he was diagnosed with heart failure. Before dawn on July 4th he was transported by ambulance to UCSF Benioff Children’s Hospital. Jill remembers feeling like her world was crashing and her son was fading away. The medical team was able to stabilize him and talked to Jill and Randy about a heart transplant. A week later he was discharged to their home in Huntington Beach so they could meet with his medical team and talk about the necessary next steps.
Once home Ian continued to struggle. Finally on August 1st Ian was airlifted by helicopter to UCLA Mattel Children’s Hospital for a heart transplant evaluation. On September 9th, Randy called the Children’s Organ Transplant Association (COTA) to learn more about fundraising for transplant-related expenses. There were many family members, church friends, work colleagues and neighbors who were anxious to find something they could do to help the beloved Rogers family. On September 12th, the family’s paperwork was received at COTA’s headquarters and Ian became a COTA Kid.
COTA is a 501(c)3 charity so all contributions to COTA in honor of Team Ian R are tax deductible to the fullest extent of the law, and these COTA funds are available for the patient’s lifetime. COTA uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers. A COTA fundraising specialist trained the Rogers’ volunteers and walked them through the entire process. These committed friends and family members quickly got to work raising funds for transplant-related expenses.
On September 17, 2016, the Rogers family received the news they had been waiting to hear — a donor heart was available and the UCLA transplant team had determined it to be a good match. Ian received his new heart, and his second chance at life, on that day.
According to Jill, “I am so grateful we chose to use COTA’s fundraising guidance. COTA put structure, accountability and credibility behind everything. I am so grateful that we chose to partner with COTA so I could stop worrying about Ian’s future insurance, hotel stays, eating out on clinic visits, commuting back and forth to the hospital, parking, etc. Transplant is not a cure, but an exchange of disease which has ongoing expenses for the rest of Ian’s life. COTA gave me peace of mind about the little expenses that were adding up and the big ones as well, including a $40,000 medical helicopter bill.”
Throughout his 81 days of heart failure, Ian maintained a blog. He wrote, “I am a novice and have no grammar skills at all, yet I enjoyed writing. I couldn’t leave the hospital to share my testimony with people. But my blog could and this brought me joy when I was confined and voiceless.” Here are a few excerpts:
Hello. My name is Ian. I am 14 years old and have gone through the grueling heart transplant process. I had a peaceful life, despite being diagnosed with a rare muscle disease called muscular dystrophy. My body was different and I felt bad at times. My muscles were not as strong as my friends, but they helped me get through my life. I accepted going to the doctors and working through things not everyone goes through.
Summer camp was where I finally took a major dive, which led to a hospital admission. After a week and a half on medicine they stabilized me and decided to send us home, our home in Huntington Beach. Yet it was not to be. We were admitted to CHOC (Children’s Hospital of Orange County). My family and I lived there while doctors attempted to battle my body with medicine. It was my 103 visitors that made me feel so loved.
We soon learned I could not be weaned off of the IV medications and would need a permanent line, and a heart transplant. They ran a whole bunch of tests and fed me from a menu like all good hospitals. After some tense waiting, I was accepted onto the list of names needing new necessities, in this case, a new heart. No more going home for me. CHOC would be my new home because I needed so much medical care to keep me alive.
Now the long wait began. I developed more symptoms as my heart worked less. I had shortness of breath and strange headaches and a stomach ache that hurt sharply. During the night my legs would shake. It hurt. I felt achy all over. We tried little things like massage or blankets, but nothing made it go away. It did not relent because my heart could not pump strong enough to get the blood it really needed. Not my stomach so I couldn’t digest foods. Not my legs, so they fell asleep. Not my head so it ached.
In the darkest of moment of the night, the NP (Nurse Practitioner) walked in with news, “A heart is waiting for you in the OR.” It was for me. It was in peak condition and we could go down for operation right now. The only thing I could do was smile with my eyes, and shake myself. I was the most delighted I had ever been. I just prayed a prayer, “Thank you God, I am so happy!” over and over again.
Because of my transplant, I have learned, most importantly, the value of having a family and church body to go with you through tough times. I never before knew how much I was loved. Yet nothing compares to learning what true peace and true happiness feel like. It’s not like the happiness on Christmas morning, but a taste of what it might be like to be in heaven.
Ian’s brother, Micah, is just starting his heart transplant journey. In December 2016 it was decided to expand the COTA for Team Ian R fundraising efforts to include Micah as well. Micah has watched his older brother go through the grueling transplant journey. Micah has told his mom he is terrified to endure the same experience, but having Ian on the other side of a heart transplant is giving him hope.
When Ian and Micah were diagnosed with Fukuyama Muscular Dystrophy they became the ‘first’ known people to have this genotype. Because they are a new discovery, the prognosis of their disease is unknown. “What a relief it is to know that despite all of the uncertainties, both Ian and Micah are COTA Kids and we can receive assistance with transplant-related expenses,” Jill said.
“Our family has two medically fragile kids, which means there are many stressors and uncertainties. The Children’s Organ Transplant Association (COTA) has been here to support us emotionally and financially. COTA’s staff members have been compassionate and encouraging cheerleaders for us and our volunteers. COTA stepped in and became a source of hope for our family just like they are for other transplant families throughout the nation,” said Jill and Randy.
“COTA is true to its vision in being the Most Trusted Leader Supporting Transplant Families,” said Jill. “COTA gave us HOPE that people really do receive transplants, survive transplants and live long and healthy lives with their new life-saving organs. COTA, and the generosity of so many supporters, continues to alleviate our huge financial stress.”
This Valentine’s Day, Ian and Micah will likely be eating their favorite foods and doing their favorite things, which will undoubtedly include making music, cooking, target shooting and telling jokes. On February 27th Ian will celebrate his milestone 16th birthday. It is indeed a month full of joy and promise for COTA’s Rogers family. Jill and Randy will be remembering Ian’s heart donor angel with love, and will be praying that when the time comes, another heart angel will be there for Micah as well.
Happy Valentine’s Day Rogers Family from your COTA Family!