In November 2010, Lorraine Hamel visited Marie at her home, having crossed paths with her at a local Craft Fair in Sherman. She was selling Ceramic Necklaces and had brought with her a Heart Necklace at Marie’s request. Marie loved it, as did her friend Janelle who ordered one on the spot also. The heart necklace was very symbolic of Matthew’s CHD, because it was a half a heart next to a whole heart. Matthew has half a heart but lives his life to the fullest! It was decided that Lorraine would make 100 of them with Matthew’s initials on the back of each one. The goal was to raise awareness and money for Little Hearts. And so began and amazing journey that led us to Matthew’s Hearts of Hope.
On December 22nd, a month later, Matthew’s friend Faith passed away and we were all devastated! It became more personal at that point and we were getting orders for the necklace from all over the place. We sold many necklaces in the early months and contributed some money to Little Hearts as was the original goal. We compiled a Board of Directors which included Matthew’s pediatrician and Pediatric Cardiologist and with much encouragement from a friend Bernadette Schopfer, we applied to become our own Not For Profit Organization with the goal of raising awareness to the #1 Birth Defect, Congenital Heart Defects and raising money for promising CHD Research.
A conversation at a graduation party with Dr. Kevin Ferguson, Matthew’s pediatrician, in June 2011 led us to a way to honor Faith’s memory, mandating pulse oximetry screening in her home state of Connecticut. Letters were written and sent to local legislators and a meeting with Senator Michael McLachlan in July 2011 resulted in a Research Report and discussions with members of the Public Health Committee. Senate Bill 56 was introduced and passed in a matter of 4 months, “Matthew and Faith’s Law” was signed by Governor Dannel Malloy on May 8th, 2012. LIVES HAVE BEEN SAVED BY THIS LAW.
In January 2013, Marie and Matthew reached out to Assemblywoman Aileen Gunther to offer their help with a similar bill in New York and ultimately were guests of honor in the NY Assembly on May 30th to witness the unanimous passing on Bill #A2316. Governor Cuomo signed it into law on July 31st!
In August 2011, Matthew underwent his 3rd open heart surgery and spent a few days in Pediatric Cardiac ICU, a very stressful place. When leaving ICU we asked Matthew’s Nurse Svetlana what we could do to help these little children, many of whom were very sick. She asked us to get her some heart pillows with children friendly patterns to help ease the discomfort of coughing after Open Heart Surgery. “Hug a Heart” Pillow Project was born.
We have hosted seven successful galas, the last two raising over $50,000 and $60,000 respectfully! We have funded 34 promising CHD Research Projects to Pediatric Cardiology Fellows totaling close to $165,000. We funded a genetic study through Dr. Wendy Chung at Morgan Stanley Children’s Hospital of New York (MSCHONY) which led us to finding the cause of Matthew’s Heart defect. He had a small mutation in a pair of genes known at NAA15. His blood is currently being studied out in Stanford Hospital in California.
We funded two 3 D Hearts Projects one at MSCHONY in the amount of $6,500 and also at Boston Children’s Hospital in the amount of $40,000.
We lastly funded a project by Dr. Mark Rodefeld of Riley Children’s Hospital in Indianapolis. He is working closely with some amazing engineers to develop a Fontan Blood Pump which will act like another ventricle and pump the blood to the lungs in these single ventricle children like Matthew. He is a few weeks away from a prototype after 15 years and will start testing it in Kansas in May.
Tomorrow two important CHD angels will have birthdays in Heaven Faith Venezia and Eiren O’Hara. We continue to honor their memory by funding CHD Research Projects to help make the lives of CHD Warriors better.
We have funded 76 CHD Research Projects totaling close to $465,000. Two of the projects that we funded this year were presented at The 8th World Congress in Pediatric Cardiology and Cardiac Surgery held in Washington DC a few weeks ago.
Dr Rodefeld’s Fontan Blood Pump was recently tested in a sheep and the results were promising. There are many smart people working hard to make life better for our CHD warriors. We will continue to fund promising CHD Research Projects knowing that the ripple effect will be long lasting.
We continue to partner with local organizations for our “Hug a Heart” Pillow Project and have likely made over 5,000 heart pillows. We have distributed the pillows to several hospitals in the tri-state area and have enjoyed seeing or hearing about the smiles on the faces of our beautiful CHD warriors.
We could not have accomplished all this without your help, support and prayers. Thank you from the bottom of my heart and Matthew’s half a heart, we feel blessed to be part of such a special organization accomplishing great things in honor of CHD warriors and in memory of our CHD angels!