Dear Mr. Sparks,
Our charity has been working hard on our research database for over a decade.
You see, the large majority of these kid did not survive before the 1980's when the ECMO (Extracorporeal Membrane Oxygenation) machine was invented. This is a heart and lung bypass machine for children.
These means that we have entire population of children reaching adulthood and no one knows what to do with them. The pediatricians can't take of them past 18 years old and the adult surgeons and practitioners don't know what to do with them as most have never seen CDH.
Families reach out to us wanting to know if their cherub can have children, if it's safe, if CDH will happen to their grandchildren. They want to know if their hearts will cause problems in mid-life or if their diaphragm patch will hold up. If reflux will get worse. If pulmonary hypertension will someday take their child as it has many young adults.
We have no answers for these families. More research is needed. We need to hire a team of researchers but we are doing this on our own, learning HIPAA compliance along the way. We can't fund research without money and we can't raise money without awareness.
This is why we need you, Mr. Sparks. Please help us to raise awareness so that we can fund research to save lives.
Dawn M. Torrence Williamson
CHERUBS President and Founder