Canavan Disease Research

I felt like the worst mom in the world. I received a call from our palliative care provider asking if my son would like a home visit from Santa since we missed the family Christmas party. I politely declined saying Maxie was an adult and at 20 years of age he was “too old for [...]

I’m generally not easily offended and I believe in free speech. But with that said, there are some rules that need to govern common human decency and how we treat children and young adults who are born with disabilities. Some comments are so hateful and disgusting they should never be made, especially on a public [...]

Nothing can prepare you for the loss of your child. I’m positive this is true. I’ve heard these words from many parents who have lost their children. Even though I haven’t experienced this loss personally, I know it must be true. There is absolutely nothing in this world that can prepare you for the loss of [...]

“When you hear hoofbeats think of horses, not zebras.” In medicine this is a reference telling doctors to first look for a more common explanation of symptoms before searching for a rare or obscure diagnosis. It makes perfect sense. First rule out the more simple possibilities until those yield no diagnosis, then begin searching for [...]

“Wow, that’s the best looking G-tube site I’ve ever seen!” Those were the first words I heard from the PICU nurse about my son. At the time he was unconscious and using a ventilator, but I understood what the nurse meant. My son is 19 years old and has had a G-tube for over 13 years. I know [...]

With Rare Disease Day approaching there is an important distinction that needs to be made because “rare disease” does not give an accurate description of Canavan disease. Canavan has recently and more appropriately been designated as an “ultra-rare disease.” While I fully support and understand the need to make people aware of rare diseases I [...]

“We might need to intubate.” There are few words that I have been anticipating and fearing as much as these. Even though my son, Maxie, was born with Canavan disease and is 19 years old, he has enjoyed extremely good health with only about three respiratory illnesses in his entire life. This is not by accident. We [...]