Family Support
Housing
Ronald McDonald House
Aurora Ronald McDonald House provides temporary housing for out-of-area families needing to be near their hospitalized children at no cost to them. Their mission is to create, find and support programs that directly improve the health and wellbeing of children.
Visit at: https://rmhc-denver.org/
Brent’s Place
Brent’s Place is a long-term home away from home for children and families with cancer or other life-threatening illnesses while they receive care at local hospitals. In addition to Safe-Clean housing, they also provide a variety of uniquely-tailored programs and services for the entire family designed to help in the healing process
Visit at: https://www.brentsplace.org/
MBA Open Doors Foundation
MBA Open Doors Foundation will provide mortgage/rental assistance to families with a child 18yrs or younger who is critically or chronically ill or seriously injured. The child must have at least seven days of inpatient hospital care. A family is allowed one grant. Applications must be completed and submitted by the 10th of the month to be considered for a grant for the first of the next month. This is not income based.
This program is available at participating hospitals. Click here for a complete list of participating care facilities.
Apply for a Grant at: https://www.mbaopensdoors.org/ourhospitals/apply-for-a-grant/
Paul Magnus Foundation
The Paul Magnus Foundation offers qualified families financial grants for their housing expenses while their child is receiving care in the hospital. They offer families of children with congenital heart defects or families who have children awaiting a heart transplant reimbursement for one month of their housing expenses (hotel, rent, mortgage, etc). They will provide families with a grant of up to $2,000 to use for their monthly housing needs while their child is receiving care in the hospital.
Apply for a Grant at: https://paulmagnusfoundation.org/apply/
Financial Support
Colorado – Home and Community-Based Service Waivers (HCBS)
An HCBS waiver is an extra set of Health First Colorado (Colorado’s Medicaid Program) benefits that you could qualify for in certain cases. These benefits can help you remain in your home by paying you for your time to take care of your child.
This waiver can also serve as secondary insurance and cover items not covered by primary insurance.
Waiver Applications: https://hcpf.colorado.gov/hcbs-waivers
Levi’s Helping Herd
Levi’s Helping Herd is a grant program offering financial support to heart families as they charge the storm against congenital heart defects. Each month, they award a $1,000 grant to a family in need to help cover expenses such as travel expenses, medical bills, gas, meals, funeral expenses, housing or specific items needed.
Applications are accepted through the month and must be submitted by the 25th of each month. Families must be nominated to be eligible for the grant.
Callie’s Giving Heart Foundation
Callie’s Giving Heart Foundation collaborates with social workers, nurses, and doctors to recognize in-need families through a grant application process. Grants are awarded to help families cover needed items or expenses during hospital stays. A few examples include groceries, gasoline, meals, travel expenses, and daily essentials.
Their network currently includes Nationwide Children’s Hospital, Cincinnati Children’s Hospital and Medical Center, and Children’s Mercy Kansas City.
Community Organizations
Sisters By Heart
Their mission expands well beyond diagnosis, providing support, education and empowerment to patients and families throughout the single ventricle lifespan. They provide care packages to make hospital stays easier and resources to help families better understand the single ventricle journey.
Request a “Newly Diagnosed” Care Package: https://www.sistersbyheart.org/our-care-packages
Request a “Fontan Superhero” Care Package: https://www.sistersbyheart.org/our-care-packages-2
Ollie Hinkle Heart Foundation
The mission of the Ollie Hinkle Heart Foundation is to address the unmet needs of heart families while transforming the future of pediatric heart care. They offer a variety of programs and support and offer an annual Take Heart conference that unites heart families with leading heart clinicians and healthcare systems to share, collaborate and lead innovation to gain courage, confidence and hope addressing the needs of today.
Ollie’s Branch Mental Health Program: https://theohhf.org/ollies-branch/
Take Heart Conference: https://theohhf.org/take-heart/
HopeKids
HopeKids provides ongoing events, activities, and a powerful, unique support community for families who have a child with cancer or some other life-threatening medical condition.
Find an event in your area: https://hopekids.org/special-events/
Apply to be a HopeKid: https://hopekids.org/become-a-hopekid/
Labeled & Loved
Their mission is to embrace and strengthen families with disabilities by providing connective experiences and educational resources for the primary caretaker igniting personal growth and systemic change within the community
They offer moms retreats, moms mingles and virtual sisterhood circles.
Learn more today: https://www.labeledandloved.org/
Research Foundations
HeartWorks
HeartWorks is laser focused on CHD research and creating positive outcomes for people born with congenital heart defects. Through their revolutionary platform, they tap the best ideas and advance them through trials and onto therapies that give children and adults with CHD an opportunity to live fulfilling lives.
Visit at: https://www.heartworksinc.org/
Heterotaxy Awareness & Support
Heterotaxy Connection offers online support groups where families can gather to ask questions, share knowledge and support each other. They believe that the most fundamental way to educate and empower one another is to come alongside each another as they navigate the difficult road of heterotaxy.
Visit at: https://www.heterotaxyconnection.org/
Limb Loss/Difference Awareness & Support
The Lucky Fin Project exists to raise awareness and celebrate children and individuals born with symbrachydactyly or other limb differences (upper, lower, congenital, and amputee). They create a support network for parents across the U.S. and around the world linking parents to medical information and resources. They provide education, host events and financially support efforts for children to attend specialized camps, obtain prosthetics, and to fund other organizations within the limb different community.
Visit at: https://luckyfinproject.org/
Building the Cure Foundation
Building the Cure Foundation was created to raise awareness about Congenital Heart Disease (CHD). Their foundation will donate all proceeds to research which will someday cure complex heart defects in children. Building the Cure Foundation wants to raise the bar and create a larger awareness around CHD, increase funding for this life saving research and emphasize the importance of finding a CURE!
Visit at: https://buildingthecure.org/
Hearts Unite the Globe
Hearts Unite the Globe is a a 501(c)3 nonprofit organization whose mission is to empower, educate and enrich the lives of members of the congenital heart defect (CHD) and bereaved communities. Hearts Unites the Globe connects our communities through our podcasts and our podcast media channel. Our vision is a world where everyone in the CHD and bereaved communities have the support they need.
Visit at: www.heartsunitetheglobe.com
Hospital Gowns
Holly’s Heart
The mission of Holly’s Heart is to spread joy and brighten the days of courageous patients by providing functioning apparel that is a comfortable alternative to the hospital gown. Little Heroes hospital apparel is available in four styles: Solid, Princess, Dinosaur and Superhero and available in newborn to adult sizes.
Brave Gowns
Brave Gowns is dedicated to transforming the hospital experience for patients of all ages by providing high-quality, comfortable, and vibrant hospital gowns. Their mission is to ease fears, support their dignity and hope during treatment.
Luke’s Fastbreaks
Luke’s Fastbreaks has created a shirt that makes a difference! Their shirts snap up and down each side and comes apart in 2 pieces allowing for easy access to IVs and lines. It is longer than a normal t-shirt, like a hospital gown and enables more privacy for patients. It is MRI and X-ray safe.
Care Package Includes: Up to three shirts, pair of gripper socks, fleece blanket, wristbands, Chapstick and encouragement card
William’s Wardrobe
William’s Wardrobe exists to provide love and light to those in the desperate fight with CHD and their surrounding communities. They provide infant robes, packages, support materials and resources to pediatric ICU patients and their families
Other Support Organizations
Icing Smiles
Icing Smiles is baking a difference! They are a nationwide nonprofit organization that delivers dream cakes at no charge to kids impacted by critical illness. (And to their siblings, too!)
Bags of Fun
Their mission is to deliver a Bag of Fun to every child fighting a long-term or life-threatening condition. They exist to bring joy, laughter and relief to every child whose health and happiness is threatened and/or compromised.
Based in Colorado, Kansas City and Omaha
Make-A-Wish
A wish experience can be a game-changer for a child with a critical illness. This one belief guides Make-A-Wish in everything they do. It inspires them to grant life-changing wishes for children going through so much. It compels them to be creative in exceeding expectations of every wish kid. IT drives them to make their donated resources go as far as possible. Most of all, it is the founding principle of their vision to grant the wish of every eligible child.
Together, we create life-changing wishes for children with critical illnesses.
Aero Angel
AeroAngel helps seriously ill children travel to distant, life-saving medical care on private jets at no cost to their families. When commercial airline travel is not a safe option because of a child’s illness, AeroAngel coordinates free flights on business jet aircraft to provide access to distant, life-saving medical care anywhere in the country.
Songs of Love Foundation
The Songs of Love Foundation crafts free, personalized original songs to uplift children and teens who are currently navigating tough medical, physical, or emotional challenges. Each “song of love” is crafted with professional quality, incorporating the child’s name and references to their favorite activities, things, people, and pets. The songs are created in any language and musical style preferred by the child – be it kids, pop, R&B, rap, rock, alternative, or more.
The Superhero Project
Using the power of art as a tool for healing, they empower youth impacted by serious illnesses, disabilities, community trauma, and other complex mental health or medical needs. They interview kids and teens about who they are beyond their diagnosis and how they want to make a positive difference in the world – their superhero mission. The storytelling collaboration continues when digital illustrators – a global League of Extraordinary Artists – design the alter egos the children have described – visual representations of their strength, courage, creativity and resilience. Families receive inspiring posters of their superheroes to treasure forever.
Bereavement Support
Remembrance Photography
Now I lay me down to sleep offers the gift of healing, hope and honor to parents experiencing the death of a baby through the overwhelming power of remembrance portraits. Their mission is to introduce remembrance photography to parents suffering the loss of a baby with a free gift of professional portraiture.
Visit at: https://www.nowilaymedowntosleep.org/
NoCo Doula Collective
Support after loss is a crucial step in healthy healing. NoCo Doula Collective doesn’t want anyone to grieve alone. Julianne is a certified bereavement doula with a passion for helping families through the grief and emotions that come with child loss, pregnancy loss and still birth.
If you are navigating this journey and looking for support, please use the link below to book a no-charge bereavement session with Julianne.
James Doss Memorial Foundation
At JDMF, they deeply understand the profound and unbearable pain that accompanies the loss of a child, as they have experienced it firsthand through the loss of their beloved son, James. They recognized that the weight of grief can feel overwhelming, compounded by the financial burden that often accompanies end-of-life arrangements. It is their unwavering commitment to alleviate this burden to some degree and provide compassionate support to families who have lost children to congenital heart disease.
In addition to providing financial assistance, they are dedicated to helping families create lasting memorials for their children.
Facing the Storm – Grief Retreat
Facing the Storm is a retreat designed specifically for heart loss moms providing a transformative journey to guide you through your storm finding solace, tranquility and a renewed purpose as you navigate the real world after loss.
Through this immersive experience, you will create space to release heavy emotions, process grief and trauma in a safe and compassionate setting, and gently rebuild a connection with yourself.
Located in Colorado
Hayden’s House of Healing
Hayden’s House of Healing provides a safe, tranquil space for bereaved mothers, fathers, couples, children and families to heal and connect together through a variety of methods and activities offered to assist in the healing process. Founded by a heart angel mom, Hayden’s House of Healing offers a variety of retreats for anyone who has experienced the death of a child.
Located in New Jersey
Visit at: https://www.haydenshouse.org/
