K SUfl

Spina
Bifida
& Hydrocephalus
Association
of 0ntario

Research Arnrareness Care Advocacv

Vol. 9, Issue2,July 2070

SPEGIAIISSUE2010
SpiritwheelwatkRunLocat
Stories
To celebrate Spina Bifida & HydrocephalusAwarenessMonth and support the Association,families,teams and
individualstook to the streets in communitiesacross Ontariofor the 3rd Annual Spirit Wheel Walk Run. There
were eighteenseparateevents around Ontario.

Thank you to those who organizedan event and to everyonewho raised pledges,walked, wheeled or ran! This
issue of Current Bulletin is devoted to you and featuresjust a few of the many stories of dedication,enthusiasm
and generositythat made this year's event such a success.

A walkwithdetermination
BryKntieRiclnrd, TlrcOshswnE4rrrr,s-s

WhenAmandaRidding,a nursefrom Oshawa,foundout22 weeksinto her

pregnancythat her unbornchildhadthe mostsevereform of spinabifida,
she knewlittleaboutit.
Turning to the Internet for more information, Ridding savs
lvhat she found online was scarv at first.
"Thev give vou thesehorrible, horrible things about it on
the Internet." she savs.
Her son Nickolas was
horn orr lr.rckyFridav,
November 13,2009.
He had his first major
surgery when he was
just 24-hours-old.The
surgery fixed and
covereda lesionon his
spine,but damageto
the nervescouldn't be
repaired.
"He then received a
shunt at three-r,r,eeks-old
due to hydrocephalus,
something r.r,eexpectecl
and tried to be prepared
for," saysRidding.
"Nickolas bounced back from both surgerieswith amazing
determination.He is a very huppy baby who takesthings in
stride and flasheshis dazzling smile at everyonehe sees."
Thankftrllv at birth, the Spina Bifida and Hydrocephalus
Association of Ontario (SB&H) stepped in to l"relpand lend
support to a family that nee'dedit most.
"When r,r'egot tl-rediagnosis and r.t'henwe \\rerein the
hospitalat first, the Associationwas very helpful in
proviclingus with information on stuff we were lvorriecl
about," she savs.
"We made it through the pregnancy not krrowing hor.r'
the spirrabificla affectec-l
Nickolas but given a range of
symptoms.SB&H provided us with valuable and helpful
information about spina bifida and hydrocephalusduring
our pregnancy as well as in the first w,eeksat the hospital."
Now Nickolas is sevenmonths old and Ridding n,antsto
give back to the Associationtl'rathas helped her and her
farnill,get to this point.
"This [r,r'as]the perfect opp'rortunitvto help," the protrd
mother explains.
On June 19,Ridcling, family and friends, along with
Nickolas,hosteda'Spirit Wheel Walk Run'to raiselnonev
for the Association. But the walk was not onlv about raising
money, it was about putting a face to spina bifida, which
is a birth defect that sets off a cliain of other problems that
make up the entire package,says l{idding.
But it doesn't slor.t,Nickolas down much, he r:olledover for
tl-refirst time last n,eeh salrs16" proud mother on the online
blog she createdto raiseawarellessabout spina bifida.
"I am most excited about being able to pr"rta face to spina
bifida to combat the belief that anyone n'ith spina bifida
r.till be paraplegic,be dependent on us forever, never walk
and alwavs need diapers.I want to short'peoplehow
rvonderful it is to have Nickolas ar-rdhow proud I am to be
h i s m o m , " s a y sR i d d i n g .
Ridding savsher goal was originally 91,000when the
10-personteam signed up, but tl'rel'62,ruraisedan amazing
fi2,204in donations for SB&H.
The walk startedin Pickeringalong the Durham Lakeshore.
The team r.talkedfor about an hour and a half, then turned
back for a total walking fime of about three l.rotrrs.
Nickolas'team registered,along with many other families
from all over Ontario. To make a donation to SB&H anvtime
you can go to wwr.t'.sbhao.on.ca/about-us/donate/making-
donation and follow the directionsto donate.
The Riddingsplan on making Nickolas'walkan annual
event.
While thereis no cure for spina bifida or hydrocephalus
there is hope,she says.
Ongoing iherapy,medical careand/or surgical treatments
are'availableto managethesecomplex condifions.Today,
research,adl,ancesin n'redicaltechnology and support for
peoplewith spina bifida and hydrocephalusenablethem to
live full and productive lives.
"My children, they have shown me what faith, hope, love
and joy truly means," acldsRidding.
"Nickolas has brought us such joy. Our lives changedthe
day we fciundout that Nickolas r,r'ouldbe born r,r'ithspina
bifida. I can't imagine what life would be like w.ithout him,
he makesour family complete." *

Community invitedto walkfor

SpinaBifida
Br1Kris Dulti, Fort Erie Times

Paul anclSoniaCote'sdaughter Saffronis still verv voullg,

but w'henshe getsolder...kidsher age will likely have
questions.

Shecelebraiedher birthdav in late June,the samemonth

that has been designatedto raisearvareness about the
Spina Bifida arrdHydrocephaltrsAssociationof Ontario.

That's\4'h)'on SundavJune6, the local couple hosted the

"SaFfi'slValk: Spirit Wheel Walk and Run" in supporr of
the Association,that both sav has been of great help since
Saffron n'as born r,r,ithspina bifida in 2006.
Soniasaid not onlv have they provided many answersto
questionsthe1"y" had over the years, tlrev are also an are
that more ans\^/erscan only be provided if the funds are
availableior ongoing research.
"They'r'ebeenso helpful to us...br-rtthere is so mnch they
still don't know about it," she said.
Li'u'ingin Ridgeway, they say Saffron is easily identified
n'hen going for regular strolls around the neighbourhood
or at the local grocery storejust down the streetfrom their
Corham Iload home.
Soniasaid she hopes the event will inspire more awareness
about her oldestdaughter'scondition and l'relppeople
realize it's OK to talk to her about her w,alkeror why slre
wears braceson her legs.
"Peopleare afraid to ask qtrestionsand shet going to spend
her whole life answeringthosesamequestions,"she said.
Over 50 people registered to participate in the walk and the
Cote'sare hoping more people in the commtrnity rl.ill get
involved in future S\MWRevents or by making a donation
to the Association.
Shesaicithis is their rn'ayof giving back to an organization
that has made raising Saffronso much easierover the vears.
"Thev really are a fantasticresource,"she added.
| | 2 peoplewalk,wheeland
runtheirwayto almost$5,000
BryKendnlDuytuis,Barnl'sBnqThis Week
Last 1'earmore than 300 volunteersfrom 1Bdifferent
If you happened to be communitiestook part in a variety of fundraisers,raising
driving through Barry's over $18.000.
Bay Saturdav mortring,
june 5, vou mav have In Barry'sBav Anita fessupdecideclto walk again because
noticed the dark and last year'sfundraiserwas so successful.
gloomy weather.
Anita \t/asvery proud to report that even though last
Despite theseconditions, year'swalk beat her expectations,this year was even more
the crowd on Lakeshore rewarding.
Drive gatheredtogether
n,ith brigl-rtspirits,and "More people volunteered, and even more money was
marvelousdetermination,for the secondannual spina r a i s e d ! "A n i t a s t a t e d .
bifida and hydrocephalusawarenessfurr-rdraiser.
T-shirt sales,deliciortsfood, donatedbooks and face
People from far and near gathered together to support, and painting were all available,and even a variety of animals
take part, in this Wheel Walk Run. were on display, thanks to Eganville'sWaddles and Wags,
which added to the eventful aftemoon.
Anita ]essupis one of manv who is verv aware of the
support that is neededto help embracethis cattse,due to Last year; 84 people n'ere able to come out and get
the challengesthat her family faceseverl' day. involved, and helpeclraiseapproximately$4,313.

Her son,Chad Stoppa,ma\/ onlv be little, but he rn'as On Saturdav,Tl2people cameout and helped sponsorthis
definitelv the biggest rav of sutt to shine on Saturday. event,raisirrgan astouuding$.1,876.

Using his walker to assisthim, and his "big-boy bike" to Jessupgreatly appreciates,and would like to thank,
peddle, he was huppy to show evervonethat there is hope everyone who raised pledges,sponsored this event, and
evervwhere,no matter what. managed to make it out.

Chad'smain challengeis mobility, but he always manages Great iob evervone!

to get by n'ith gentle patienceand lots of love.

a LongWay!
A LittleChangeGoes
This August, SB&H will participatein the LCBO'sDonationBox program.Our
message"Every healthybaby is a victory!" will be featuredin over 600 LCBO
stores throughoutthe province.Last year more than $10,000was raised for
our folic acid public awarenesscampaign.This is a critical messageand you
can help.Simplytell your friendsand familythat when they visit their local
LCBOin August,and donatetheir sparechangeto SB&H,they are making
a difference!Our goal is to surpass last year'stotal! With your support
we have the potentialto reachthousandsof women of childbearingage.
Thank you for your commitmentand generosity.
Thank you to the LGBO,its employeesand especiallyits
customers for providingthis tremendous opportunity-
 Gommunity
euents& updates
(More event listings are available at www.sbhao.on.ca,/calendar)

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i:, Se &H Events ,1 SB&HPresentationsand

SupportGrcups'.:i;*rr",.t 2010AnnualMeeting
I AdunHydrawphalus i
A safeplace for aclultsliving with hydrocephalus
I I ]oin us on Saturday,October2,2010at the
i to ask questions,share stories and connect with I CNIB, 1929Bayview Ave., Toronto as we
! otl,ersin similar situations.We are taking a break I
for ]ulv and August. Next meetirlgsare \Vednesday, celebrateour achievements,keep informed
I i,
September29, and October27,2A70. and salute our partners & friends.
I i
/r l;
'.'., is'S$ss-ss\.i;3,;,r;:ii; TheDay'sEvenb
Tasfer's GlubsSSs...-:.::,
I i $peakerc
! Cotti.tgall'fooclies'!Come meet anclclinewith fellow I
i SB&H'ersat a different restauranteachmonth. Each t Paige Church, MD - Clinical Director, Neonatal
Y
g "Taster" is responsiblefor purchasinghis/hero\\'n Follow up Clinic, SunnvbrookHealth SciencesCentre;
,,_

i
$ meal and beverages.Pleaseregister in advance. i Paediatricianin the Spina Bifida, Spinal Cord Prograrn
X at Holland Bloon,iew Kic-l'sItehabilitationHospitaI.
t SB tn H Ghoicer {ilrs:/", '; ',ii.'ts Dr. Michael Cusimano - Neurosurgeonand researcher
Conrrectwith adults in the London arealiving ltiih in hydrocephalusat St. Michael'sHospital.
I
sb/h. Enjo1,a casual atmospherewhere you can chat,
slrareideas,network and have some fun! For full AGM
details,contactCarolina at579-907-0335or
carrol l_sc@vahoo. ,1
com or Teresaat wamme.stG)yahoo.
Awards& Lunchnn
{ ca or 519-473-5069. !
:i li
L*r*,"'.r(}'ra^)cor)oaaaar*'ca.1{>a+7;<rrplrcoct<x/a<\ax<,aoa.<x,<}oooa4)o*af
BoardMeeting
LondonAwssible SporbDemoDayi:-.s$*.*
Youth for Youth of the ThamesValley Children'sCentre
Spaceis limited. email provincial@sbhao.on.ca
lt'ill be hosting an accessible
sports demo day, featuring or to reserveyour seat
or call 800-387-1575
local teanrs,scrimmageganles,a luncheonar-rc1 Paralympic today.
athletes!
Date:August7,2010
Time: 10-'l Youthllrop-in *s *...sS
Location:ThamesVallev Children'sCentregym. For youth ages16-29with phvsical disabilitiesand their
779BaselineRd. E., London, On friends.Join us on:
Email: r'outh @rtvcc.
on.ca Phone: 519-685-870
0 ext. 53766
Date: Saturday,September25,2010
Looking For WoilO for*rux$s Time:7:00-10:00pm
Cost $3.00
The WorkplaceEssentialSkills Partnership(WESP)is "Your
Location:Earl BalesCommunity Centre
Kev to Success"
4169BathurstStreet(Bathurst& Sheppard)
Registrationis now OPEN for the next Four-Week D], games and snackslvill be provided, and attendant sen,ice
Workslrop are available.

Start Date: August 1.6,2010 RSVP to Natalie Tirnbrell at 476-425-6220

ext.3296.

Contact:Michelle Pandith,Employment SpeciaIist Eztentorganizersinclude SB&H, Hollancl Blooruiew Kids

for more information or to book an appointment Rehsbilitation Hosqrital,Anne Jolurston Health Station, and
416-486-2500ext 8342 Citu of Toronta Forestru E Recreation (North District).
Email: mpandith@tccrw.org