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Spirit Breakthrough Spina Bifida and

& Hope Hydrocephalus

Spirit Wheel Walk Run Spirit Wheel Walk Run
While there is no cure for spina bifida or Nickolas’ Loved Ones June 19, 2010
hydrocephalus there is hope. Ongoing We are a group of family and friends of
therapy, medical care and/or surgical Nickolas Ridding who are participating
treatments are available to manage these in this year’s Spirit Wheel Walk Run in
Putting a Face to
complex conditions. Today, research, June. Spina Bifida
advances in medical technology and Nickolas’ Loved Ones are participating
support for people with spina bifida and in the 3rd annual family friendly event
hydrocephalus enable them to live full with the SB&H.
This walk was organized by Nickolas’
and productive lives
mother, and will walk along the
Durham lakeshore. We are walking to
raise awareness and support for the
SB&H. We are showing the community
that This is what Spina Bifida Looks

Programs and services offered by Spina Bifida & Hydrocephalus

SB&H: Association of Ontario
555 Richmond St., West
 Help line P.O. Box 103, Suite 1006,
 Online community forum Toronto, Ontario, M5V 3B1
Phone 416-214-1056
 Information and education Raising awareness and
Fax 416-214-1446
 Researched, quality education support in the
 Resource Centre
 Prevention and awareness programs Charitable Registration
 CURRENT magazine and community #10799 9310 RR0001
based Bulletin keeps you informed of
latest developments Spina Bifida and Hydrocephalus
Association of Ontario
Nickolas’ Story
The Facts
Nickolas was born on lucky Friday November
13, 2009; he was born with the most severe
Spina Bifida Causes of Spina Bifida form of spina bifida (a myelomeningocele).
Nickolas had his first major surgery when he
Spina bifida is the most common The exact cause of spina bifida is not known. was 24 hours old. Surgery fixed and covered
permanently disabling birth defect. It Research suggests it is a combination of the lesion, but damage to the nerves cannot
occurs 1 in 1000 births. Spina bifida is a heredity, nutrition and environmental factors. be repaired. Nickolas also needed a shunt at 3
neural tube defect that happens when the weeks old due to hydrocephalus, something
Folic acid (a B vitamin) has proven to reduce we expected and tried to be prepared for.
spine of the baby fails to close. It occurs in
the risk of neural tube defects, such as spina Nickolas bounced back from both surgeries
the first four weeks of pregnancy… before
bifida, by 70%. Women of child-bearing age, with amazing determination. He is a very
most women even know they are
who are sexually active, should take a daily happy baby who takes things in stride and
vitamin which contains at least 0.4 mg of folic flashes his dazzling smile at everyone he sees.
Babies born with spina bifida may have an acid, three months prior to conception and Nickolas has brought us such joy. Our lives
opening or lesion on their spine. Because during the first 3 months of pregnancy. changed the day we found out that Nickolas
of this opening, the nerves in the spinal would be born with spina bifida. I can’t
column may be damaged and not work Hydrocephalus imagine what life would be like without him,
properly. This results in varying degrees of he makes our family complete. We made it
Hydrocephalus comes from the Greek
paralysis. The higher the lesion is on the through the pregnancy not knowing how the
language; hydro means water (cerebral spina
spinal column, the greater the paralysis. spina bifida affected Nickolas but given a
fluid [CSF]) and cephalus means head.
Even with no visible lesion, there can be range of symptoms. The SB&H provided us
accompanying nerve damage. 85% of Hydrocephalus is the excess accumulation of with valuable and helpful information about
individuals with spina bifida also have CSF that increases pressure within the brain. If spina bifida and hydrocephalus during our
hydrocephalus. this pressure is not released, individuals may pregnancy as well as in the first weeks at the
experience serious health problems.
We take each day as it comes and Nickolas
Hydrocephalus may be present at birth or may enjoys showing off what he can do!
Occulta, Meningocele, develop later in life.
Treatment of Hydrocephalus
These are the 3 main types of spina bifida. When I found out about the Spirit Wheel
There is no known way to prevent or cure Walk Run I was excited to have an
People who have occulta generally
hydrocephalus. The most common treatment is opportunity to raise money for the
experience few or no symptoms and often association that has given us hope in
don’t know they have it. Those with the surgical insertion of a flexible tube (a
Nickolas’ journey with spina bifida and
meningocele may experience minor shunt) into the brain. The shunt diverts the hydrocephalus. It also gives us the
disabilities however problems may develop flow of CSF away from the head into another opportunity to say “This is what spina
later in life. Myelomeningocele causes area of the body where it can be absorbed. bifida looks like – and he’s beautiful and
Treatment may minimize and in some cases able, and joyful.”
nerve damage and more severe disabilities.
eliminate the effects of hydrocephalus. - Amanda (Nick’s mom)