WHAT WE DO
Our Mission.
Our mission is to raise awareness for Congenital Heart Disease (CHD) and fund research to advance treatment options. It is also our mission to spread the love and awareness that Brett filled us with for the wonderful, capable people living with Down syndrome.
While there are many needs within the CHD and Down syndrome communities, based on our own experience we have decided to pour our passion into the specific focus areas below.
WHAT WE DO
Focus Areas.
Research
Family & Provider Support
Mental Health Support
Code Queen Bee
Down Syndrome Awareness & Celebration
CHD Awareness
Research.
Research can seem like such an elusive process with far-off results we may never understand. Our interest in research comes from knowing that there could have been more options for Brett. Once we decided to start the foundation, we knew research would be our primary financial focus. What if someone had said yes to research that could have saved Brett’s life? Research for congenital heart disease does exist, and it is our mission to find the most promising projects; ones that have the possibility to come to fruition and be at the bed-side in a relatively reasonable timeframe.
We know that research for CHD is severely underfunded as compared to other childhood illnesses. It will take all of us working together to continue spreading awareness and to making progress year after year for better outcomes.
Family & Provider Support.
The amount of financial strain on a family with a lifelong diagnosis like CHD can be overwhelming and adds another layer of stress on an already tough situation. There are many different circumstances that determine what this looks like for each family such as, the amount and length of hospitalizations, other children at home who need to be cared for, loss of income for one or both parents, and increased medical bills including therapies, medications, appointments.
We work hard to alleviate some of this worry by working with hospital social workers who get to know and understand the needs of the in-patient families. We receive requests for many types of support including assistance with bills, mortgages/rent, gas, food, lodging, as well as expenses for far too many funerals. It is our hope that this assistance makes a difference and reinforces that a family who has walked in their shoes wants to offer a small act of kindness.
We average 20 such requests per month from multiple institutions.
Mental Health Support.
While the need for mental health support isn’t limited to families within the CHD community, we know that there is a huge gap in services available to patients and families. This journey is often one of the most stressful situations a family will ever experience. Having the support of someone who understands not only the medical complexities, but also the emotional challenges, is known to be invaluable to families. There are studies currently underway in the US to prove out the theory that this type of support positively impacts not only the mental health of the patient but also the physical outcomes. For this reason, we are supporting these types of services in several ways.
Code Queen Bee.
Following their own experience with losing a child, Ellen and Bo have turned an act of kindness that was done for them into a program called Code Queen Bee that we offer to hospitals. Having to choose a final outfit for a child is an unimaginable task that can come with not only emotional pain and trauma but also is sometimes a financial challenge. This program allows us to stock cozy pajamas for final days as well as other options for burial. It is our intent to alleviate the stress of leaving the hospital to do so and to offer to take this off the plate of grieving parents. We hope that one day there is no need for this.
Down Syndrome Awareness and Celebration.
Ellen often says that one of her favorite things about Brett is the fact that she had Down syndrome. While receiving the diagnosis was shocking and scary, that extra chromosome was life changing for all those involved. It is our mission to spread awareness and celebrate all the capabilities of our friends in the Down syndrome community. We do this by supporting programs in our area from partners such as Best Buddies, GiGi’s Playhouse, the Down Syndrome Association of Middle Tennessee, the Down Syndrome Diagnosis Network and more.
CHD Awareness.
One in 100 babies is born with CHD. This is a well-known fact within the CHD community, but many are surprised to hear how common it is. This is not a rare disease. This is the most common birth defect. We have made it part of our mission to continue to spread awareness so that more people understand the need for research and better detection and treatment options. The more people who join this effort with us, the more likely there is to be increased focus within the medical and insurance worlds.