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The Month of June

June is spina bifida awareness month in Ontario and provides us with the opportunity to put a face to spina bifida. Every year we look for different ways to help to bring awareness, understanding and support. This year I developed a video to educate and showcase what spina bifida means to our family.

Spina Bifida and Hydrocephalus

Spirit Wheel Walk Run Nicks Cheering Squad
We are a group of family and friends of Nickolas Ridding who are participating in this years Spirit Wheel Walk Run in June. Cheering Nick on! Nicks Cheering Squad is participating for our fourth year, in the annual family friendly event with the SB&H. This walk was organized by Nickolas mother, Amanda, and will walk along the Durham lakeshore. We are walking to raise awareness and support for the SB&H. We are showing the community thatThis is what

Spirit Wheel Walk Run June 23, 2013

Putting a Face to Spina Bifida

Spina Bifida Looks Like!

Donations can be made online Or contact Amanda at
Spina Bifida & Hydrocephalus Association of Ontario 555 Richmond St., West P.O. Box 103, Suite 1006, Toronto, Ontario, M5V 3B1
Charitable Registration #10799 9310 RR0001

Spirit, Breakthrough & Hope

While there is no cure for spina bifida or hydrocephalus there is hope. Ongoing therapy, medical care and/or surgical treatments are available to manage these complex conditions. Today, research, advances in medical technology and support for people with spina bifida and hydrocephalus enable them to live full and productive lives.

Raising awareness and support in the community

The Facts
Spina Bifida
Spina bifida is the most common permanently disabling birth defect. It occurs 1 in 1300 births. Spina bifida is a neural tube defect that happens when the spine of the baby fails to close. It occurs in the first four weeks of pregnancy before most women even know they are pregnant. Babies born with spina bifida have an opening (called a lesion) in their spine. Because of this opening, the nerves in the spinal column may be exposed and damaged. This can result in varying degrees of paralysis, difficulty walking and continence issues. The higher the lesion is on the spinal column, the greater the paralysis. Even with no visible lesion, there can be accompanying nerve damage. 85% of individuals with spina bifida also have hydrocephalus.

Nickolas Story
Nickolas was born on lucky Friday November 13, 2009. He was born with the most severe form of open spina bifida (myelomeningocele). Nickolas had his first major surgery when he was 24 hours old. Surgery fixed and covered the opening, but damage to the nerves cannot be repaired. Nick was also born with hydrocephalus, and has had 2 surgeries to place as well as repair a shunt.
Nick is a happy and healthy boy. He loves playing with his sister and making people laugh. He is curious and always wants to know what is going on. He has an active imagination and loves to play pretend. He wants to be a pirate when he grows up. Nickolas has brought joy to our family and I cant imagine what life would be like without him. He has made our family whole. Spina bifida has brought some challenges into our lives, and we meet these challenges together. Nickolas works hard every day to be independent; he walks with a walker and has his own wheels. He loves being on the move. He is starting his school adventure in September and is very excited. Nick takes things at his own pace and we are there cheering him on! The SB&H has provided us with valuable and helpful information about spina bifida and hydrocephalus as well as opportunities to raise awareness and put a face to spina bifida.

Causes of Spina Bifida

The exact cause of spina bifida is not known. Research suggests it is a combination of heredity, nutrition and environmental factors. Folic acid (a B vitamin) has proven to reduce the risk of neural tube defects, such as spina bifida, by 70%. Women of child-bearing age, who are sexually active, should take a daily vitamin which contains at least 0.4 mg of folic acid, three months prior to conception and during the first 3 months of pregnancy.

Hydrocephalus comes from the words meaning water in the head or water on the brain. Hydrocephalus is the excess accumulation of cerebral spina fluid (CSF) that creates pressure within the brain. If this pressure is not released, individuals may experience serious health problems. Hydrocephalus may be present during pregnancy, develop at birth or may develop later in life.

Types of Spina Bifida

These are the 3 main types of spina bifida.

Myelomeningocele is the most common type of

spina bifida. It causes nerve damage and more severe disabilities. Babies born with meningocele have an opening in the back, but no nerves are damaged. There may by minor disabilities however problems may develop later in life. Spina bifida occulta, has no open lesion and there is no nerve damage. Generally people experience few or no symptoms and may not even know they have it.

Treatment of Hydrocephalus
There is no known way to prevent or cure hydrocephalus. The most common treatment is the surgical insertion of a flexible tube (a shunt) into the brain. The shunt diverts the flow of CSF away from the head into another area of the body where it can be absorbed. Treatment may minimize and in some cases eliminate the effects of hydrocephalus.

This is the fourth year our family has participated in the Spirit Wheel Walk Run. It is amazing to experience the outpouring of love and support from family, friends and co-workers. People want to help us bring awareness and do something! We have learned a lot in our journey with spina bifida and hydrocephalus and the SB&H is an association that has given us hope and knowledge in Nickolas journey. This event gives us the opportunity to say This is what spina bifida looks like and he is beautiful and able, and joyful. - Amanda (Nicks mom)