Mended Little Hearts of Phoenix is continuously looking for resources to help our Congenital Heart Defect families along their journey. Below are some sites we have found to be helpful:
Education / Heart Information
The Emily Center: The Emily Center is open to the public and is the largest pediatric consumer health library in the Southwest. The Emily Center provides access to pediatric health information that is accurate, easy to understand and free of charge.
American Heart Association: The American Heart Association is the nation’s oldest, largest voluntary organization devoted to fighting cardiovascular diseases and stroke.
Pediatric Congenital Heart Association: founded on the key purpose to be the resounding voice of the pediatric patient population. PCHA works passionately through collaboration in advocacy, educationand research to reduce the impact of congenital heart disease while striving to realize a world free from it.
General Resources:
SunDrop Society: Sundrop Society is an organization that exists to capture unique moments with children in Arizona who face serious illnesses, disabilities or injury through the art of photography.
Icing Smiles Inc.: Icing Smiles is a non-profit organization that provides custom celebration cakes and other treats to families impacted by the critical illness of a child.
The Miracle League of Arizona: The Miracle League of Arizona is a non-profit organization in North Scottsdale, dedicated to providing a safe, successful and enjoyable baseball experience for children, teens and adults with disabilities or special health care needs.
Information about Feeding:
Feeding Matters: Feeding Matters is helps families with children who have feeding struggles. Feeding Matters partner with medical experts t ensure a collaborative approach to treatment that impacts the unique journey of every family.
Family Support:
Mended Little Hearts, Inc. (National Organization): Provide families and caregivers of children with CHD's an outlet in which they can find answers, education, resources and peer-to-peer support.
Sisters-by-_Heart: Sisters by Heart is a group of heart moms, who reach out and support parents of children diagnosed with Hypoplastic Left Heart Syndrome (HLHS).
The Heterotaxy Connection: Offer support and up to date resources for families affected by Heterotaxy.
Care Fund: Their mission: to help meet the needs of families who find themselves emotionally destroyed, financially harmed, alone, and mentally incapable of dealing with what we believe is the most helpless situation imaginable — when their child faces a fight for their life.
Hope Kids: Hope Kids provides ongoing events and activities and a powerful, unique support community for families in Arizona who have children with congenital heart defects, cancer, or some other life threatening medical condition.
Raising Special Kids: Raising Special Kids provides support and information to parents of children, from birth to age 26, with a full range of disabilities and special health care needs. Programs are offered at no cost to families, and are available in English and Spanish.
Transplant Families: Transplant Families offers support and resources to families of children facing transplants.
Estate Planning:
Law Offices of Caleb S. Lihn, PLLC: Estate Planning/Special Needs Planning & Elder Law - 20118 North 67th Ave., Suite 300-426, Glendale, AZ 8530; (602) 332-6652; CLihn@LihnLaw.com
Education / Heart Information
The Emily Center: The Emily Center is open to the public and is the largest pediatric consumer health library in the Southwest. The Emily Center provides access to pediatric health information that is accurate, easy to understand and free of charge.
American Heart Association: The American Heart Association is the nation’s oldest, largest voluntary organization devoted to fighting cardiovascular diseases and stroke.
Pediatric Congenital Heart Association: founded on the key purpose to be the resounding voice of the pediatric patient population. PCHA works passionately through collaboration in advocacy, educationand research to reduce the impact of congenital heart disease while striving to realize a world free from it.
General Resources:
SunDrop Society: Sundrop Society is an organization that exists to capture unique moments with children in Arizona who face serious illnesses, disabilities or injury through the art of photography.
Icing Smiles Inc.: Icing Smiles is a non-profit organization that provides custom celebration cakes and other treats to families impacted by the critical illness of a child.
The Miracle League of Arizona: The Miracle League of Arizona is a non-profit organization in North Scottsdale, dedicated to providing a safe, successful and enjoyable baseball experience for children, teens and adults with disabilities or special health care needs.
Information about Feeding:
Feeding Matters: Feeding Matters is helps families with children who have feeding struggles. Feeding Matters partner with medical experts t ensure a collaborative approach to treatment that impacts the unique journey of every family.
Family Support:
Mended Little Hearts, Inc. (National Organization): Provide families and caregivers of children with CHD's an outlet in which they can find answers, education, resources and peer-to-peer support.
Sisters-by-_Heart: Sisters by Heart is a group of heart moms, who reach out and support parents of children diagnosed with Hypoplastic Left Heart Syndrome (HLHS).
The Heterotaxy Connection: Offer support and up to date resources for families affected by Heterotaxy.
Care Fund: Their mission: to help meet the needs of families who find themselves emotionally destroyed, financially harmed, alone, and mentally incapable of dealing with what we believe is the most helpless situation imaginable — when their child faces a fight for their life.
Hope Kids: Hope Kids provides ongoing events and activities and a powerful, unique support community for families in Arizona who have children with congenital heart defects, cancer, or some other life threatening medical condition.
Raising Special Kids: Raising Special Kids provides support and information to parents of children, from birth to age 26, with a full range of disabilities and special health care needs. Programs are offered at no cost to families, and are available in English and Spanish.
Transplant Families: Transplant Families offers support and resources to families of children facing transplants.
Estate Planning:
Law Offices of Caleb S. Lihn, PLLC: Estate Planning/Special Needs Planning & Elder Law - 20118 North 67th Ave., Suite 300-426, Glendale, AZ 8530; (602) 332-6652; CLihn@LihnLaw.com
Education:
On July 7, 2014, Karen Alaniz, Heart Mom and Educator presented the information below regarding IEP's and 504 plans for parents of children with a CHD. To view the presentation, please click "Download File"
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Integrative Healing:
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Mindfulness First: MindfulnessFirst offers age appropriate research-based mindfulness curriculum to students in Arizona.
Bereavement:
Aubrey's Hope Blossoms: The loss of a child is the most devastating experience a parent can face. Aubrey's Hope Blossoms provides Blossom Bags containing items that are meant to provide some comfort at the time of loss, as well as ways to treasure their precious memories.
Aubrey's Hope Blossoms: The loss of a child is the most devastating experience a parent can face. Aubrey's Hope Blossoms provides Blossom Bags containing items that are meant to provide some comfort at the time of loss, as well as ways to treasure their precious memories.
