365daystogive's Blog

Each time I make a donation this year I want to choose a cause that is close to my heart.  There couldn’t be anything closer than my mother’s illness.  She was finally diagnosed, after many years and several misdiagnoses, with CADASIL.  The long name,cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy, is as intimidating as the diagnosis is.

To explain it best, I borrowed from the National Institute of Health:

…an inherited condition that causes stroke and other impairments. This condition affects blood flow in small blood vessels, particularly in the brain. An abnormality in the muscle cells surrounding these blood vessels (vascular smooth muscle cells) gradually destroys these cells. The resulting blood vessel damage can cause migraines and other impairments of normal brain function. Later in life, the damaged blood vessels can cause reduced blood flow to various tissues in the body (ischemia). Although the severity of symptoms varies among those affected, people with CADASIL typically have more than one stroke in their lifetime. Recurrent strokes can progressively damage the brain, causing loss of intellectual function (dementia).

It is difficult to watch my mother suffer through mini-strokes, loss of memory, dizziness, fainting spells and other ailments attributed to CADASIL.  It is even scarier still knowing that I have a fifty percent chance of having the disease myself, but have chosen not to be tested for it.

It is a little known disease but those who have it and their caretakers are well-aware of the troubles that go with any leukodystrophy disease.  Thus I chose Hunter’s Hope Foundation, whose mission is as follows:

• To broaden public awareness of Krabbe Disease and other Leukodystrophies thus increasing the probability of early detection and treatment.
• To gather and provide current, functional information and service linkages to families of children with Leukodystrophies.
• To fund research efforts that will identify new treatments, therapies and ultimately, a cure for Krabbe Disease and other Leukodystrophies.
• To establish an alliance of hope that will nourish, affirm and confront the urgent need for medical, financial and emotional support of family members and those afflicted with Leukodystrophies.

It is difficult enough to watch my mother and wonder when the “big one” will come, it must be absolutely heart-wrenching to be a parent to a child afflicted with Krabbe’s or other affiliated diseases.  Please open up your hearts to this cause.

http://hhf.convio.net/site/PageServer