Sunday, January 11, 2009

Parent Resources

Moma’s Starter Set

Below are websites and phone numbers that I have found in my quest for answers and assistance on our journey with Rosemary. These sites are geared toward providing information, education and connection for individuals and their families affected by children with heart disease.

My list below is a good start, but try to Google search your local churches, Kawanis Clubs, Lions Clubs, and Child Care Councils to see if they know of any ways to offer assistance or have any other resources to offer you--possibly names of other foundations, individuals who can help or people in similar situations.  This is how I came across all of these individuals and organizations.  I'm hoping that I've saved you some time...best of luck!

If you have a site to share, please email me and I’ll post it.
This page will be updated on a weekly basis.



CONNECTION. INFORMATION.  FINANCIAL ASSISTANCE.

Little Hearts
A support system for parents and families of children with CHD's.

Project Sunshine is a nonprofit organization that provides free educational, recreational, and social programs to children facing medical challenges and their families.

Heart Support of America
President, Laura Perry
Offering grants to assist with transportation, lodging, and financial support.

Carepages.com
CarePages websites are free patient blogs that connect friends and family during a health challenge.  They also offer a number of forums.

Baby Hearts Press

Heart of Hearts
New York-Presbyterian
The University Hospital of Columbia and Cornell

Hope For HLHS

Gloria’s Place of Hope

Krey.org/hlhs

American Heart Association

Deborah Heart & Lung Center
Assistance and information related to surgical procedures
1-800-535-6790


TRANSPORTATION.  (Google Free Air Line) 



Flying Wheels Travel
Assistance in paying for transportation to surgical procedures
1-800-535-6790

Will fly patients.
1-800-446-1231

OTHER CONNECTIONS.

Hill-Burton Hospital Free Care
Financial Assistance toward medical bills, not doctor fees.
1-800-638-0742



Last Updated 06/13/09


1 comment:

  1. Lori--thank you so much for sharing your story and Rosemary's. I have a 5 month old son, Timothy, who has both pulmonary and tricupid valve malformations and who has had one open-heart surgery with a second surgery on the horizon in the next few months. It was very helpful to discover your blog site, and the list of resources that you have posted. Thanks for reaching out and sharing the journey. My blog site is thehulsehome.blogspot.com and our hospital journal is available at www.caringbridge.org/visit/timmyhulse. Best wishes! --Wendy Hulse

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