I hope everyone has had a wonderful Thanksgiving week so far. It has been way too long since I’ve updated the blog! Nora celebrated her fourth birthday in July and Callum celebrated his second birthday in September. They are growing and thriving and lighting up the world around them. We still can’t believe they are both here safe and sound after we were told we could never have any more children after Lucy died.
I wish so desperately that every woman with these antibodies could have the phenomenal care I received during my pregnancies with Nora and Callum. Unfortunately, it is fare more common to see women receive inadequate care during their alloimmunized pregnancies than the proactive care I had with my last two pregnancies. Nora and Callum are my constant reminders of how these pregnancies can and should turn out if treated properly. For years I have wanted to do something more to fight this disease and prevent other parents from experiencing the trauma and devastation that we have endured. With the encouragement of family, friends, doctors and fellow antibody parents, I decided about a year ago that I would take the leap and try to start a non-profit organization to help support families facing alloimmunization (antibodies during pregnancy) and to help protect babies threatened by HDFN (hemolytic disease of the fetus and newborn.) I have teamed up with some wonderful people and we are so excited to announce that The Allo Hope Foundation is now an official 501(c)(3) non-profit organization.
Our main goal is to prevent harm, stillbirth and infant death caused by maternal alloimmunization and HDFN. We are dedicated to providing patient advocacy, support and education while promoting research and improving healthcare practices for the condition.
We are in the start up/launch phase at the moment, raising funds and forming our patient advisory board and medical advisory board. Our first priority is to raise funds and create a website where patients, their families and care providers can find information, resources and support. The Allo Hope website will also allow us to reach our global alloimmunization and HDFN community and bring more awareness to the disease. Come and follow us on Facebook and Instagram and stay tuned for ways that you can help! Thank you to everyone who has prayed for me and encouraged me on this journey for the past seven years, I don’t know where I would be without you.