Second Annual Cycle with Heart
Please join us for our second annual Cycle with Heart during Congenital Heart Defect awareness week. All of your support these past few years has been tremendous and so much appreciated. We thank you from the bottom of our hearts for all of your prayers, kind words, donations, and support. Check out below how the money raised last year was utilized!
This event is extremely important to our family, as our sweet toddler, Evan, was born with a Critical CHD, known as Hypoplastic Right Heart Syndrome or "half a heart". Evan has only one pumping chamber vs. a normal heart which has two pumping chambers. The right ventricle (which Evan does not have) is responsible for pumping oxygen rich blood to the lungs. Evan received his first of two planned open heart surgeries (bi-directional Glenn) in September 2016. The procedure improved immediate signs and symptoms of the underlying heart defect. However, it does not correct the heart defect. Other surgeries are usually necessary in the future to repair the defect itself. Currently, Evan's cardiologist, Dr. Rathod, is planning on doing Evan's next open heart surgery when he is 3 years old. This is called the Fontan. After the Fontan, Evan will have full circulation and therefore oxygen saturations closer to 100 (presently his baseline is 86/88). This is the last "planned" surgery, but it is important to know that these surgeries are not considered a fix. His future is unclear, but also filled with a lot of HOPE. So much work and progress has been made to help individuals with "half a heart", but there is so much to be done.
Last year, we raised nearly $28,000 at this event! These donations have made a big difference in helping to give Evan a chance to grow old with his identical twin, James, and his big brother, Alex, and big sister Annabelle. All money raised will go into the "Evan's Heart Fund", which we opened in conjuction with Boston Children's Hospital. The money can only be used for single ventricle research.
Check out how your generous donations from last year are being put to work, in the words of Evan’s cardiologist, Dr. Rahul Rathod:
It’s hard to believe that you can live with half a heart.
But this is the reality for Evan Sheiber and many patients born with only one pumping chamber (a single ventricle). This is a life long condition that usually requires multiple procedures and open heart surgeries, the last of which is known as a Fontan operation. Over the past few decades we have learned a lot about how to help kids survive with a single ventricle. Now these kids are becoming adults and it’s clear there is still more to learn. Can we predict the future? Can we identify the kids and adults who are at risk for bad things that might happen? Can we turn back the clock and prevent them from going down that path? How can we help kids like Evan lead a full and healthy life?
Dr. Rathod and doctors at Boston Children’s Hospital have made it their life’s mission to answer these questions. While they have already made amazing progress thus far, it is clear the answer lies in larger, multi-center studies. They are in the beginning phases of creating an international registry to help answer these questions. The FORCE study (Fontan Outcome Registry using CMR Examinations) is led by Dr. Rathod. He has assembled a team including doctors from Texas Children’s, Children’s Hospital of Philadelphia, Toronto Sick Kids, University of Michigan, and Nationwide Children’s Hospital. In addition, there are 13 additional hospitals in North American and Europe that will participate in this study.
While the road ahead is unknown and fraught with bumps, Evan has a team behind him at Boston Children’s to help him every step of the way. The Sheiber’s have created the “Evan’s Heart Fund” to make this happen. You can be part of that team to help Evan and others just like him. Together, we can and will make a difference.
- 4 Boston Red Sox Tickets (donated by Daniel Glantz) with batting practice and Red Sox gear (winner picks game of their choice)
- Fashion & Beauty Basket: $300 Mitchells Gift Card (GC); $150 Lucy's GC; $50 Soleil Toile GC; $100 SheLaLa GC; Benefit Beauty Bash for 8 guests ($500 value) + Benefit beauty products; New Beauty Wellness Massage; Brigtenex/ Invisaline at Dr. Geni Westport; WOW Haircare Products; Giobagnara Desk Clock donated by Sam Allen Interiors
- Restaurants: $100 Oranic Market Gift Card (GC); Dinner for 4 at Bar Taco; $200 Rizzutos GC; $100 Granola Bar GC; $50 Fleishers Craft Butchery GC
- Evan's Favorite Things: $30 Sherwood Diner Gift Card (GC); Gift Basket from Double L Market; 1 Free Scoop/ week for a year at Saugatuck Sweets; 1 Class for 2 Months at Kidville Westport; Westport Firehouse Tour
- Autographed Sports Memorabilia (Donated by Daniel Glantz): Framed and Autographed Alex Ovenchkin Picture (Washington Capitals; Signed Daytona 500 Car by Toyota Team Drivers (Busch, Hamlin, Edwards, Bowyer, Kenseth); 2017 Giants Team Collector Football signed by each team member (only 1002 exist)
Congenital Heart Disease is Facts (source: Pediatric Congential Heart Association):
- There is no cure for CHD.
- CHD is the leading cause of birth defect related deaths.
- Approximately 25% of children born with CHD will need life-saving intervention in the first weeks and months of life. Many individuals with CHD require additional procedures, operations and medications as children, adolescents and adults.
- Survival rate to age 18 is still only 85% for complex CHD.
- Those who do survive face a lifetime of complex specialized medical care, face a lifelong risk of additional health problems and risk of premature death, yet fewer than 10% of adults with CHD in the U.S. who need care from specialty adult CHD centers are getting this recommended care.
Boston Children's Heart Center Facts:
- Did you know 1 in 150 children enter the world with a heart defect? Boston Children’s founded the field of pediatric cardiovascular care a century ago, and continues to lead with life-saving innovations.
- Boston Children's has been ranked the country's top pediatric cardiology program every year since US News & World Report started its rankings.
- Boston Children's cardiology program is one of the country's busiest; surgeons perform nearly 900 open-heart surgeries and 2,000 cardiac catheterizations each year
- The hospital's patient care programs are remarkably sensitive to what sick and injured children and their families really need.
- Researchers regularly make amazing discoveries that change children's lives.
- Boston Children's welcomes kids whose families can't afford health care—more than any other hospital in Massachusetts.
- Community programs make a point of reaching out to help low-income and at-risk kids.
And the hospital doesn't just stop there. Boston Children's truly understands the importance of training the next generation of top pediatricians and nurses, so they can continue to provide the best, most innovative care possible to kids.
We thank you from the bottom of hearts for all of your support.
The Sheiber Family