I, along with nine fellow heart moms, would like to reshape the outlook for HLHS infants and children. Over the last few months, we formed Sisters by heart - an HLHS support group - to provide support and resources to newly diagnosed HLHS parents. It is a way for us to give back and light the way for another family following behind us on an otherwise very dark path. We want to give hope, to give love, to give support, and to give practically. We provide care packages for newly diagnosed parents which includes many items we’ve found useful to us along our journeys (pacifiers, mini-notebooks, specialized baby clothes that allow for tubes and wires, etc.), bio sheets on our children (there is nothing to give you hope quite like seeing an older child with your child’s same condition who is flourishing) and informational booklets and fliers providing current information on HLHS and options for newly diagnosed parents.
I know many of you who read my blog have been touched by Bodie’s story and the stories of so many of his heart friends and are eager to find a way to help. Here is your chance.
Sisters by heart is comprised of 10 heart moms from various cities around the United States. We are seeking help with our initiative, either through donated items or financial assistance. (Please understand that we are not yet incorporated as a 501(c)(3) – we have not ruled this out, but it is not yet something we have pursued – so any financial contributions will not be tax-deductible at this point.) We hold Sisters dear to our hearts, as we realize there is a significant need and lack of direct support to newly diagnosed HLHS parents. To help Sisters or to learn more about our mission, please visit our blog at www.heartsisters.blogspot.com or email firstname.lastname@example.org with any questions.
Please, join us in giving back and lighting the path for newly diagnosed heart parents.
From our hearts to yours,