Maryn...Heart Hero of the Month of August
On March 13, 2013 Maryn was born at Cleveland Clinic's Special Delivery Unit, looking surprisingly healthy for having been diagnosed in utero with a rare congenital heart defect. Shortly after birth, she was officially diagnosed with Truncus Arteriosus, a VSD & an ASD. Maryn's health quickly went down hill. At about 6 hours old she stopped breathing and needed to be intubated. Maryn had her first open heart surgery at 9 days old, a couple of weeks later, it was apparent that her heart was still not working as it should, forcing her second open heart surgery when she was 4 weeks old. Maryn's second surgery seemed to be the key to getting Maryn home, but something still wasn't right, she wasn't eating orally and was coughing up large amounts of mucus. It was soon determined that Maryn's reflux was so severe she needed a g-tube and Nissen fundoplication. Maryn had a hard time recovering from this surgery and about a month later it was apparent she was once again in severe heart failure.
In the beginning of August 2013, Maryn was evaluated for a heart transplant, shortly after it was determined she was not a candidate for transplant due to her 22q11.2 Deletion Syndrome and the antibodies she developed after over 40 blood transfusions. Unfortunately, her health continued to deteriorate. Thursday, August 29, 2013 our world came crashing down when we were told not to expect Maryn to survive the weekend; if she did survive, and was healthy enough for surgery, her medical team gave her a 5-10% chance of surviving the double valve (aortic & pulmonary) replacement she needed. Maryn fought hard and made it through the weekend, then miraculously, on her 6 month birthday, Drs Pettersson and Stewart were able to successfully replace both valves and Maryn came home for the first time a few weeks later, 218 days after she was born.
Although Maryn continues to struggle with some gross motor skills, she is a pretty typical, sassy toddler who loves Elmo, playing catch, her brother, and the iPad.
Heart Hero of the Month
Each month we pick on family to tell their amazing story of courage & strength to overcome the everyday struggles. We donate a $50 Gift card to our Hero for Toys R' Us to help put a smile on their faces. If you would like to sponsor a month, please contact us!
Addison...Heart Hero of the Month of July
Addison Faith was born on 8/31/2012 and diagnosed at 4 days old with several congenital heart defects. Subpolmonic VSD, PFO, and Pulmonary Valve Stenosis. She was already in heart failure at this time and put on medications to get her home. She spent the next 5 1/2 months at home in heart failure while she tried to get as big as she could. Finally, at 5 1/2 months old she couldn't hold out on medication controlling the failure anymore and on February 19, 2013 underwent successful Open Heart Surgery. She spent 99 minutes on bypass while angels that walk on earth repaired her broken heart. After surgery and recovery she underwent another two months in failure while her heart and body adjusted to having a mended heart. While open heart was successful at patching the PFO and VSD she still has Pulmonary Valve Stenosis being monitored as well as Enlargement of the Pulmonary Artery. At her last appointment it was found that her Tricuspid valve has started leaking at a moderate level as well as some issues involving the doming of her Pulmonary artery. She is being monitored until further intervention is needed.
Shortly after 1 years old she was also diagnosed with Ehlers Danlos Syndrome. This is syndrome affects all of her connective tissue, joints, and ligaments in her body and results in massive joint pain, instability, and breathing issues. Despite her daily pain struggles she keeps smiling and making everyone laugh any chance she gets! She is a true inspiration, she is fearless, she is a warrior! All children battling CHDs are warriors!
Addison enjoys Babydolls, playing with her sisters, and most of all she absolutely loves the Radio City Rockettes and anything Christmas oriented! She is the biggest ray of sunshine from the moment she wakes up. She is excited about turning 3 soon and starting preschool in the Fall.
Mia...Heart Hero of the Month of June
Mia Taylor Wilson was born 5 weeks early on February 19. 2011 with an extremely rare Congenital Heart Defect called Ebstein's Anomaly. She was only the 2nd case in 10 years that they had seen in Akron. She was extremely sick and we were prepared for the worst- especially given only a 10% chance of surviving. She was life flighted via jet to Mott Children's Hospital in Ann Arbor, Michigan at 7 days old in an attempt to get her to a place where they could handle her best. Little did we know that she would spend the next 11 1/2 months in Michigan waiting for her to get well enough to come home. She suffered multiple strokes, several cardiac arrests, many surgeries and procedures and lots of infections that first year, but despite all the odds, she just celebrated her 4th birthday.
Mia still has struggles with about 35 medications per day, cerebral palsy, low oxygen levels, 24 hour feeding tube, a cochlear implant, low vision, physical therapy, occupational therapy, vision therapy and speech therapy, but she is a HAPPY GIRL!
She has made lots of progress and truly enjoys life to the fullest. Mia has another surgery in June and then hopefully we can wait till after summer for her next big open heart surgery. Mia loves the water, boating, swimming, painting, playdoh and bubbles, but is happiest of all when all her family is together with her!
Follow Mia's story at www.MiasBigHeart.com
Vivian...Heart Hero of the Month of May
This is Vivian. She has Heterotaxy RAI (right atrial isomerism) with Asplenia, Single Ventricle, Right Dominant AtrioVentrical Canal (AVC), Total Anomalous Pulmonary Vein Return (TAPVR), Pulmonary Atresia, Right Aortic Arch and Pulmonary Vein Stenosis (PVS) in all 4 veins. She also has Malrotation and developed a colon stricture. She has had 3 open heart surgeries; modified Blalock–Taussig (BT) shunt and TAPVR repair at 3 hours old, sutureless repair (for the PVS) at 3 months old and a bi-directional Glenn at 7 months old. In addition she has had 11 heart catherizations, 2 bowel surgery and 2 gtube surgeries and developed NEC after one of her heart catherizations. Because of her specific combination of heart defects, we were given a 95% mortality rate for the first year of her life. She has overcome the odds, but her fight is far from over. She will require additional heart catherizations for many years and possibly the Fontan (an open heart surgery) at around 3-5 years old. Despite everything she is one of the happiest toddlers you will ever meet. We struggle with feeding and speech issues, but developmentally she is pretty much on track for a "normal" child her age.
She is a typical 3 year old who loves trains, cars, Elmo & Sesame Street, numbers, letters, being a big sister, and playing outside with her bike. She has a contagious smile and laugh. Everyone she meets is a friend, never a stranger.