A life well worth living

Here is a great story about a Canadian couple whose first child was born with Canavan disease, a rare, inherited neurodegenerative disorder that usually leads to death by the age of four. Jacob’s condition was diagnosed at two months and his shocked parents, Ellen and Jeff Schwartz, were told that he would never speak, sit up or even see.

Today, Jacob is nearly 12. It’s true that he cannot sit up or speak, but he smiles and makes a range of appropriate noises as he lies on his mat. When his dad lies next to him and yells at the hockey game on television, Jacob howls laughing. He goes to a special school, and at home enjoys hearing his younger sister and brother playing around him in the garden while he lies in a swing. It says a lot for his parents that they decided to have more children given the implications of Jacob’s diagnosis and the strenuous demands his condition makes on them.

And that is not all. With community support Ellen and Jeff founded a charity, Jacob’s Ladder, to promote awareness and research for neurodegenerative diseases. Ellen, a teacher, wrote a book, Lessons from Jacob, and has now launched Project Give Back, a course to develop empathy and philanthropy among school children. As part of the course, Ellen brings her elder son to the class. Though the students are awestruck and silent at first, she says they “go from fear to acceptance in 40 minutes”.

There’s just one off-key note in this wonderful story. As well as funding research, some of the $1.7 million raised by Jacob’s Ladder over the past decade has gone into promoting genetic screening campaigns in several cities across Canada. It’s not clear what that entails, but one hopes it does not feed into the trend of snuffing out the lives of babies already conceived.

While anyone contemplating marriage and parenthood could benefit from being informed about their risk of passing on such a disease, it’s also evident from the Schwartz’s story that a handicapped child can do others an immense amount of good.