The Mended Hearts, Inc. Mended Little Hearts Mended Hearts BIG Program

The Mended Hearts, Inc. Slide 22/8/2014 What is Mended Little Hearts (MLH)? MLH is a program of Mended Hearts. MLH provides support to families and caregivers who have children with congenital heart defects. MLH started in 2004, and currently has 52 local support groups in 22 states run by volunteer coordinators, typically parents of children with heart defects. Our slogan is Little hearts hold big hopes.

The Mended Hearts, Inc. Slide 32/8/2014 What is our Purpose? Parents facing the diagnosis of a child with a heart defect or heart disease need to know that they are not alone and that there is hope in the midst of the crisis. Through the parent-to-parent support system and educational resources of Mended Little Hearts, families will be able to develop an immediate connection and begin to build a sense of hope for the future.

The Mended Hearts, Inc. Slide 42/8/2014 Need for Mended Little Hearts Alarming Statistics* Congenital heart defects are the most common birth defect in the United States. Twice as many children die of CHD than from all forms of childhood cancer combined. One in every 111 infants is born with CHD-- approximately 36,000 babies annually. Over 1,300,000 Americans have CHD. Cardiovascular disease is the second leading cause of death in children under age 15. More than 210,000 cardiovascular procedures occur on youth age 15 and younger each year. *According to the American Heart Association

The Mended Hearts, Inc. Slide 52/8/2014 Need for Mended Little Hearts Anyone can have a child with a heart defect or heart disease. The presence of a serious congenital heart defect often results in an enormous emotional and financial strain on young families at a very vulnerable time. Mended Little Hearts groups provide resources and a caring support network to help families work through overwhelming emotions and move forward to find laughter, healing and hope.

The Mended Hearts, Inc. Slide 62/8/2014 Who are our members? Families and caregivers of children with congenital heart defects or heart disease Mended Hearts members who also participate in MLH. Adults with congenital heart defects Members of the medical community who care for children with heart defects and heart disease Friends, family members and others who want to support Mended Little Hearts Members of organizations and community members who wish to support Mended Little Hearts All who want to help and support Mended Little Hearts are welcome

The Mended Hearts, Inc. About MLH Members The MLH group is made up mostly of young families who have at least one child with CHD who has undergone at least one open-heart surgery. Often one parent stays home with the CHD child as conventional child care is not always a safe environment for a child with a heart defect and some day care facilities are not willing to take on a CHD child. The financial toll on these families is often great. It is not uncommon to have a minimum of $10,000 in medical debt. Some parents have chosen to divorce so they qualify for state support to pay for the medical bills for their CHD child. Some parents have to sell their homes, or even move to a new state in the hopes of better benefits or coverage for their CHD child. Slide 72/8/2014

The Mended Hearts, Inc. Our Kids Slide 82/8/2014

The Mended Hearts, Inc. Slide 92/8/2014 How does MLH reach out? Group Meetings Group meetings are at the center of what MLH does. Not all MLH groups have a hospital close to them where they can visit, so meetings become the main way the groups connect. Most MLH group meetings have an educational speaker or provide resource information to families Families and caregivers experience peer-to- peer interaction which helps promote healing through sharing and support Group meetings are flexible and designed to meet the specific needs of the community

The Mended Hearts, Inc. Reaching Out (cont.) Creating Awareness Mended Little Hearts groups create awareness so people realize they are not alone and so that others learn about heart defects and disease They create awareness through –Attending health fairs, heart walks and other heart events –Providing stories and information to the local media –Partnering with other organizations the can promote awareness of congenital heart defects –Speaking about MLH and heart defects to different organizations and audiences Advocacy MLH groups participate in local and national advocacy efforts to improve the lives of those with CHD. Slide 102/8/2014

The Mended Hearts, Inc. Slide 112/8/2014 Reaching Out (cont.) Reaching Out (cont.) Accredited Hospital Visiting Like Mended Hearts, some Mended Little Hearts groups have established accredited visiting programs recognized by hospitals around the nation Families who receive a visit from an accredited visitor quickly realize that they are not alone and that there is hope MLH visiting is mostly caregiver visiting rather than patient visiting. Social Events Families can get together and have some fun to help ease the stress involved with having a child with a heart defect or heart disease. In some areas, these are done in conjunction with MHI.

The Mended Hearts, Inc. Slide 122/8/2014 Similarity to Mended Hearts People that CareThe most important similarity between MHI and MLH is that our members care deeply about helping one another and giving back. Group MeetingsMost groups meet on the monthly basis. Often they have educational speakers. Often one of MLHs biggest issue is meeting attendance and member participation. Visiting ProgramsSome groups have accredited visiting programs similar to Mended Hearts caregiver visiting. Social EventsGroups try to have at least two social events throughout the year where members can get together and have fun. AdvocacyMended Little Hearts supports issues that help those with cardiovascular disease

The Mended Hearts, Inc. Differences from Mended Hearts Caregiver FocusMLH is a program designed for the caregiver rather than the patient. CHD IssuesThese often can be VERY different from cardiovascular disease issuesnutrition, developmental delays, exercise, surgeries and procedures, awareness, rehab, medications, etc. Also, more often than not a CHD will be accompanied by other medical issues or defects. Hospital VisitingThis is not at the core of the MLH group group meetings are. Visiting is done at some locations. MLH visiting is caregiver visiting. Group Make-UpAs discussed previously, MLH is made up of young families often under tremendous emotional and financial strain. Slide 132/8/2014

The Mended Hearts, Inc. Slide 142/8/2014 How MLH and MHI work together How MLH and MHI work together There are many ways MH chapters and MLH groups can work together. Joint meetings, where appropriate, and joint social events Speaking at each others meeting Joint collection of items for care packages for families with children in the hospital Collaborating on awareness eventscreating awareness of heart disease AND congenital heart defects. Advocacy effortsex. a lobby day or visiting Congress Members to talk about increase in research funding for the National Institutes of Health (NIH) for cardiovascular disease and CHD.

The Mended Hearts, Inc. Slide 152/8/2014 How MLH and MHI work together How MLH and MHI work together Working Together Continued. Share tables and booths at health fairs and heart walks Creating media stories or releases that create awareness of cardiovascular disease and CHD. Joint newsletters or reporting on each others events in the newsletter Joint fundraisers or providing services and financial assistance

The Mended Hearts, Inc. Slide 162/8/2014