.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:
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 Syndrome.
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.
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.
First Things First: The Side by Side Program provides support for families raising children ages birth to 5 years who may be concerned about their child’s development or may have questions about parenting their child. These free services include home visits and information about community resources.The program serves families of infants, toddlers and preschoolers who have concerns about their child’s development, but are not eligible for special needs services provided through AzEIP, Department of Developmental Disabilities or their local school district. Families must reside in the specific zip codes of the First Things First Phoenix South region. Learn more Download a Referral Form
Education / Heart Information
Mended Little Heart Guide: Mended Little Hearts and St. Jude Medical partnered to create a one-of-a-kind, digital resource guide for parents and caregivers of children with congenital heart disease. Medical professionals and parents worked together on this guide to provide accurate and honest information that addresses the tough feelings, questions and concerns parents and caregivers may have.
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.
Adult Congenital Heart Association: Supporting adults born with congenital heart defects, the ACHA works to improve and extend the lives of the millions born with heart defects through education, advocacy and the promotion of research.
Events
Nick & Kelly Children's Heart Fund Summer Camp: Nick and Kelly Heart Camp is an organization that provides a free of charge, medically supervised specialized summer camp for children ages 7-17 who are living with heart disease. The camp is located in Prescott, Arizona at the Friendly Pines Camp Grounds for five days.
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.
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 helps families with children who have feeding struggles. Feeding Matters partners with medical experts to ensure a collaborative approach to treatment that impacts the unique journey of every family.
Pediatric Feeding Disorders, an article from the Journal of Pediatric Gastroenterology and Nutrition
UCP of Arizona (United Cerebral Palsy): UCP of Central Arizona provides comprehensive services to individuals with disabilities and their families by providing physical and developmental support as well as educational growth which is the foundation for independent living. “Life without Limits”
Giving Back to Patients:
Rooted Community Yoga Project: Rooted Community Yoga Project's mission is to bring yoga to every body!
Blanket Hugs: Blanket Hugs was founded in June of 2015. Blanket Hugs is an organization that makes blankets for children 18 or younger fighting a life threatening illnesses living in the USA or Canada. The blanket is based off of what the child likes or wants. When being a kid and also sick you often feel isolated and alone. Knowing that someone in the world cares and wants to see you smile makes these kids feel loved. These kids love blankets when being hospitalized or when they just don't feel good. Blanket Hugs runs off only donations and sponsors. So donations are needed to keep running!
I'm still Me: Rock your INDIVIDUALITY during a hospital stay with these unique gowns! Items are adult and children sizes.
Heroic Hearts: Heroic Hearts offers the ideal, patented replacement to the standard drab, cold hospital gown. Designed to let a patient feel more like his or herself and less like “the sick kid”, this unique children’s hospital apparel offers plastic snaps at seams to allow multiple outputs and accessibility for monitor lines, IVs, casts, etc. while offering greater mobility and a sense of security.
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
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 Syndrome.
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.
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.
First Things First: The Side by Side Program provides support for families raising children ages birth to 5 years who may be concerned about their child’s development or may have questions about parenting their child. These free services include home visits and information about community resources.The program serves families of infants, toddlers and preschoolers who have concerns about their child’s development, but are not eligible for special needs services provided through AzEIP, Department of Developmental Disabilities or their local school district. Families must reside in the specific zip codes of the First Things First Phoenix South region. Learn more Download a Referral Form
Education / Heart Information
Mended Little Heart Guide: Mended Little Hearts and St. Jude Medical partnered to create a one-of-a-kind, digital resource guide for parents and caregivers of children with congenital heart disease. Medical professionals and parents worked together on this guide to provide accurate and honest information that addresses the tough feelings, questions and concerns parents and caregivers may have.
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.
Adult Congenital Heart Association: Supporting adults born with congenital heart defects, the ACHA works to improve and extend the lives of the millions born with heart defects through education, advocacy and the promotion of research.
Events
Nick & Kelly Children's Heart Fund Summer Camp: Nick and Kelly Heart Camp is an organization that provides a free of charge, medically supervised specialized summer camp for children ages 7-17 who are living with heart disease. The camp is located in Prescott, Arizona at the Friendly Pines Camp Grounds for five days.
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.
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 helps families with children who have feeding struggles. Feeding Matters partners with medical experts to ensure a collaborative approach to treatment that impacts the unique journey of every family.
Pediatric Feeding Disorders, an article from the Journal of Pediatric Gastroenterology and Nutrition
UCP of Arizona (United Cerebral Palsy): UCP of Central Arizona provides comprehensive services to individuals with disabilities and their families by providing physical and developmental support as well as educational growth which is the foundation for independent living. “Life without Limits”
Giving Back to Patients:
Rooted Community Yoga Project: Rooted Community Yoga Project's mission is to bring yoga to every body!
Blanket Hugs: Blanket Hugs was founded in June of 2015. Blanket Hugs is an organization that makes blankets for children 18 or younger fighting a life threatening illnesses living in the USA or Canada. The blanket is based off of what the child likes or wants. When being a kid and also sick you often feel isolated and alone. Knowing that someone in the world cares and wants to see you smile makes these kids feel loved. These kids love blankets when being hospitalized or when they just don't feel good. Blanket Hugs runs off only donations and sponsors. So donations are needed to keep running!
I'm still Me: Rock your INDIVIDUALITY during a hospital stay with these unique gowns! Items are adult and children sizes.
Heroic Hearts: Heroic Hearts offers the ideal, patented replacement to the standard drab, cold hospital gown. Designed to let a patient feel more like his or herself and less like “the sick kid”, this unique children’s hospital apparel offers plastic snaps at seams to allow multiple outputs and accessibility for monitor lines, IVs, casts, etc. while offering greater mobility and a sense of security.
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.
M.I.S.S. Foundation: Established in 1996 by Dr. Joanne Cacciatore, the M.I.S.S. Foundation is an international volunteer-based organization providing support, counseling, advocacy, research, and education services to families experiencing the death of a child.
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.
M.I.S.S. Foundation: Established in 1996 by Dr. Joanne Cacciatore, the M.I.S.S. Foundation is an international volunteer-based organization providing support, counseling, advocacy, research, and education services to families experiencing the death of a child.
