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Meet Our New Friends, Johan and Tariq |
 Leslie Lopez, the mother of 3-year-old twin boys Johan and Tariq, says she’s relying on her faith in God to see her through each passing day. Leslie and her boys are currently in the midst of a full-blown medical crisis, getting by one day at a time. Leslie is no stranger to heartache and tough times. In 2000, she and her husband lost their firstborn child, a daughter named Chelsea, at 21 months of age. The toddler died suddenly and without warning. Only afterwards did Leslie learn that Chelsea had suffered from cardiomyopathy and died from heart failure. Leslie and her husband were devastated. The twins were born in June of 2004. Both boys had been tested as infants for the same heart disease that claimed their older sibling, and both were given a clean bill of health. Leslie and her husband breathed a sigh of relief and began adjusting to life with twins. Things seemed to be going well until February 2007 when Johan and Tariq began showing signs of illness. Leslie’s worst fears came true when both boys were later diagnosed with cardiomyopathy. Because of the scarcity of qualified specialists in their home country of Trinidad and Tobago, the boys’ primary doctor suggested Leslie take the boys to see a pediatric heart specialist in the U.S. The doctor worked with Leslie’s Trinidad based insurance company to arrange for a single doctor visit for both boys. A trip was coordinated and by summer, Leslie and the boys were on their way to New York to see a cardiologist in Brooklyn.
During the initial visit, Leslie was told that both boys were in extremely poor health and were in need of a heart transplant. The boys were transferred to Morgan Stanley Children’s Hospital of New York-Presbyterian (CHONY), where after some lengthy negotiating with various social service agencies, Johan was listed for transplant. His condition deteriorated quickly, and he had to be placed on a bi-ventricular assist device to buy some time until a donor heart was available. He nearly died. The following day Johan received his new heart, and sailed through the post-operative period. We are told that Johan is thriving, today, some 5 months after transplant. Because of stringent post-transplant follow up care requirements, Leslie and Johan must remain in NY a full year before they can be released to return to Trinidad. Tariq seemed to be responding well to the new medication regimen he started under the care of heart failure specialists at CHONY.
EKF had learned of Leslie and the boys situation back in October and began correspondence and initiated assistance at that time. While in NY, Leslie has no income, no home, and a stress fractured support system. She cannot return home because of the strict post-transplant care regimen to be followed with Johan. Despite all these challenges, Leslie was getting by day to day.
In mid November, Tariq’s condition began deteriorating. Tariq is now hospitalized at CHONY, and listed for transplant with a 1A, highest priority, status. Meanwhile, Leslie and Johan are staying at the hospital with Tariq as they have no other option. Leslie and the boys will be required to stay in New York a full 12 months after Tariq’s transplant.
Leslie is committed to doing whatever it takes to get both boys the medical care they need and ultimately to take them back home to Trinidad when their medical crisis has been stabilized. Until then, she’s walking a tough road and needs some help. Thanks to the generosity of our many contributors, EKF is committed to helping Leslie through this difficult season. Please remember Johan, Tariq, and Leslie in your prayers. We’ll keep you posted on their progress.
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 Canon Andrew Norman, 4 1/2, was a warrior from the beginning of his life to the very end. Canon, who doctors called "Stormin Norman", was born February 4, 2002, in Little Rock, Arkansas. Canon's mom, Carla, was told at 18 weeks into her pregnancy, that her son would be born with a congenital heart defect called Hypoplastic Left-Heart Syndrome. The future was unknown for her unborn son; however, Carla continued with the pregnancy and gave birth to a beautiful baby boy.
Moments after his birth, Canon was whisked away to Arkansas Children's Hospital to the CVICU where he would undergo his first major heart surgery, the Norwood. Only four days old, Canon came through the surgery; but three weeks later, he went into heart failure. Canon would then have to undergo another heart surgery to repair his aorta. Several complications occurred due to the second surgery, which resulted in Canon being unable to come off the ventilator. At 2 months old, Canon's doctors told Carla that he would need to have a tracheotomy in order for him to breathe. Canon spent the next five months in the hospital receiving developmental therapies.
At seven months old, Canon underwent his third major heart surgery, the Bi-directional Glenn. Canon stormed through this surgery and was now able to breathe on his own, without assistance. After eight long agonizing months in the hospital, Carla was now able to take her ittle one home.
Canon joined his older brother, Chase, and sister, Kamryn, at home, just in time for the holidays. What a wonderful present to finally have their little brother home! Canon developed normally and kept his family very busy. He loved going to the ballpark to watch Chase play ball. And he was always a trooper when Kamryn wanted to play dress-up; he was often the guinea pig. He loved life and everyone loved him.
At the age of two, Canon's health was declining, and he went into heart failure once again. He underwent his fourth open-heart surgery to repair his aorta. Doctors then told Carla, now a single mother of three, that Canon would eventually need a heart transplant. Carla made life as normal for Canon as possible. Canon, just like any normal toddler, made messes, threw fits when he didn't get his way, played in the dirt with his trucks, and always wanted to be a baseball player.
The next two years went by quickly, and Canon's health continued to decline. In May 2006, it was time for Canon to be put on the transplant list. Carla and family were scared of the unknown, but knew it was best for him.
After one false alarm, Carla was paged on the night of September 15, 2006, for Canon's new heart. Tears of joy and heartache over the donor families loss were shed by Carla and family. Canon's doctor said it was the "perfect heart"! After many hours of surgery, Canon remained in critical condition for a week. Floods of emails came to Carla through Canon's website www.caringbridge.com/visit/canonnorman . People from all over the world were praying for Canon's recovery.
Canon then began to run a fever, and doctors ran many tests. CMV (a virus) was detected in Canon's blood. Not starting treatment until a week later, Canon suffered a massive stroke which required emergency surgery to remove the blood from his brain. Canon fought for his life the entire week and then suffered two more brain bleeds. Carla felt the last squeeze of her little one's hand on October 20, 2006. Canon made it through the night and was taken off life support on October 21, 2006. Carla held her Canon as he took his last breath. Many friends and family were there to support her through what seemed a nightmare.
Unfortunately, Carla and family had to figure out how to go on with their lives without Canon. What an empty void in everyone's lives! Canon's funeral brought so many friends, family, doctors, nurses, and therapists who had worked with Canon over the last four and a half short years. It was truly a celebration of Canon's life. Canon touched so many with his wonderful smile and spunky personality. Although his family was heartbroken for their loss, Canon will suffer no more. God is taking care of him, and staying very busy, I'm sure. The star baseball player is hitting homeruns as we speak!
Submitted by the family of Canon Norman. |
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 Jack Gilroy, 8 ˝, from Nanuet, New York, is an amazing young man whom we first met on May 26, 2006, at Morgan Stanley Children’s Hospital of New York- Presbyterian (CHONY).
Jack had always been healthy. He had no known medical problems until January of last year when he came home from school and told his parents that his heart “hurt” and was “beeping” too fast. Jack’s mother, Denise, had also noticed his appetite had been very poor for a couple of weeks. She took him to see the pediatrician who discovered that Jack was in heart failure. They rushed him to Columbia University where cardiologists determined his heart failure was due to a viral myocarditis. Jack’s cardiologists were initially hopeful that they could treat his condition with medication, but were also concerned that he may need a heart transplant at some point in time. The course of treatment would depend on the way Jack’s heart responded to the medication. Time would tell.
A few months rolled by and in mid May, 2006, at a ‘routine’ visit to the cardiologist, Jack’s parents were told that his condition was deteriorating. Jack’s doctors recommended that he be admitted to CHONY and listed for a heart transplant. Jack waited just five days to receive his “gift of life”. His immediate post-transplant period went very well and Jack was discharged home after 11 days.
We had the pleasure of meeting Jack and his family just after he had received his heart transplant. Jack spent the first few days after his transplant in the cardiac pediatric ICU room adjacent to Erika’s. Erika provided entertainment for Jack while he recovered from his operation and we waited for ‘the call’ that a new heart was available for her. Wearing her pink flip flops, pushing her baby in a stroller, and being followed by mom or dad with her IV pole, Erika passed by Jack’s room several times a day. Jack got a kick out of seeing Erika always on the move and even bought a little stuffed dog for her, which Emma has now adopted.
Jack and his family touched our lives by their faith, strength, warmth and concern for Erika. As Jack recovered quickly, we felt God was encouraging us with his successful outcome post transplant. Even though Jack wasn’t as sick as Erika, he was a ray of sunshine when our days were very uncertain.
Today, Jack is finishing up his second grade year and keeps busy playing sports and following his favorite sports teams. He's had a busy year. Less than three months post-transplant Jack surfed with his dad everyday while on vacation at the New Jersey shore. The next week he started soccer season with dad coaching. He played a full season, scoring seven goals when not playing goalie himself, and he enjoyed the thrill of playing in the league championship. Jack was a guest of the NY Yankees, visiting the team in the dugout. He was invited into the NY Giants locker room after a game to meet the players. He threw out the first pitch at a minor league baseball game: a strike in front of thousands of fans in attendance. He was made an honorary team captain at West Point for an Army football game, participating at midfield for the pre-game coin toss. And he was a special guest at a Villanova basketball game, meeting the coach and team in the pre-game locker room. The Gilroys have become active in encouraging families to consider organ donation. They are very thankful to the donor family for Jack’s amazing gift and have a greater appreciation for life. On May 26th, 2007, the Gilroys will celebrate the first anniversary of the day Jack received his new heart. What a year it’s been! We are happy to know the Gilroys and we wish them and especially Jack, all the best life has to offer. |
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 Claire Elizabeth Fowler, 5, a vivacious blue-eyed little girl from Texas, stole our hearts with her courageous battle of heart disease to heart transplantation. We first learned about Claire just a few months after we had lost Erika. Claire’s mom, Sarah, had posted a “cry for help” on the Children’s Cardiomyopathy Forum. Claire, who was 4 1/2 years old at the time, had been diagnosed with Idiopathic Pulmonary Hemosiderosis and Restrictive Cardiomypathy (RCM). In layman terms, Claire was bleeding internally due to a rare and severe heart defect, RCM. She would probably have less than two years to live without a transplant.
Sarah’s description of Claire’s condition, and her initial reaction as a parent, was all too familiar to us. Our hearts ached for Sarah and what she and Claire were about to experience together. Sensing the love for her daughter and her fear of what the future may hold, we were immediately drawn to Sarah, and of course, Claire. We felt a strong tug on our heartstrings to contact them and offer our support and encouragement. It was as if God had allowed our paths to cross so we could all draw strength from each other as we dealt with the circumstances life had thrown at us.
After waiting for two months at home for a new heart, Sarah received the page from the transplant team at Children’s Medical Center Dallas. On December 6, 2006, Claire received her new heart. Her transplant went flawlessly, and she was allowed to return home just 10 days after her surgery. Claire continues to do well almost 5 months later; all of her biopsies and follow up testing are indicating that her new heart is working perfectly, with no signs of rejection. Both Claire and Sarah have amazed us all by their incredible strength and determination to overcome adversity.
Today, Claire has a new lease on life and is looking forward to going to preschool in the fall. She is a blessing to us all. It warms our hearts to hear Sarah talk about her joy in seeing Claire “becoming the little girl she was always meant to be”, free from the encumberances of a failing heart. To learn more about Claire, you can visit her caringbridge website at www.caringbridge.org/visit/clairefowler . You go, Claire! |
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Friends of EKF