Monday, June 23, 2014

Raising $500+ for Spina Bifida and Hydrocephalus: My Birthday Wish

There is less than a week left to donate to my fund for the Spina Bifida and Hydrocephalus Association of Ontario (SBHAO)! Please help me raise $500+ to reach my new goal of $1000. This fantastic non-profit organization provides programs and services to people affected by these conditions, including me.

I was born with hydrocephalus, which is excess fluid on the brain. It caused my Dandy Walker syndrome, a malformation of the cerebellum and the fluid spaces around it. To treat my hydrocephalus, my neurosurgeon Dr. Harold Hoffman implanted a ventriculoperitoneal (VP) shunt, a long tube which goes from my brain to my belly and drains the excess fluid from my brain, at SickKids hospital in Toronto when I was 10 days old.

Over 85% of people born with spina bifida, the most common disabling birth defect in Canada, are also born with hydrocephalus. Spina bifida prevents the spinal column from developing properly, causing permanent damage to the spinal cord and nervous system. Folic acid intake during pregnancy or even before can dramatically reduce the risk of spina bifida.

Dandy Walker is one of many conditions that can cause hydrocephalus. It can occur at any stage of life and it is more common than spina bifida.

One type, normal pressure hydrocephalus, occurs in more than 1 in 200 people over 55 and about 5-10% of people showing signs of dementia actually have NPH. This condition can often be reversed with implantation of a shunt.

Shunts malfunction and become infected in many people with hydrocephalus and often require surgeries to correct. I am very fortunate that I haven't had these problems. I turn 28 tomorrow and so will my shunt. Donations to my SBHAO drive would be an amazing birthday gift!

My conditions have affected my learning, mobility and health. SBHAO has been a wonderful support to me over the years and have helped me adapt. I would love to give back to help others as I have been helped.

SBHAO receives no government funding and relies on the support of donors to do its great work.

In addition to raising funds, please share this post with others. Tell your friends about folic acid/spina bifida, NPH, Dandy Walker and congenital hydrocephalus. Chances are, you have known, currently know or will know someone affected. Awareness is extremely important to make a difference in the lives of people affected.

If you'd like to know more about me and my life with a shunt, please let me know.

Note: I raised $550 for SBHAO. Thank you to everyone who supported me!

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