27 October 2008
This Wall Street Journal article is about a family facing the same disease that Garty and Joshua have been diagnosed with. It is so disturbing to realize that our boys' birthmother would probably have been advised to abort had she received prenatal care in the US with our current technology. It is also frightening to read the account of this poor child's health, knowing that it is only a matter of time until our sons' health will likely deteriorate. However, it makes me pause to realize that so little is known about their disease, and even this child's diagnosis is now in question. We are blessed that both boys apparently have mild cases of the disease, but the long term prognosis is still unpleasant. We are thankful for the ARPKD/CHF Alliance, a non-profit organization committed to research, education, and advocacy on behalf of those with this unusual disease. We are also thankful that we live close to Children's Hospital of Philadelphia where the head of the nephrology department has conducted a significant percentage of the world's research on ARPKD/CHF.