PAGE 16, WH[TY MRE PRESS, -WEDNESDAY, -E~rmmmR iD, 1990 Number one diabiing. ~p1na mia: irthdfc By Trudie Zavýadovice Pive years ago when FaLye Olver. was pregnant with her third child, a Il was well with the world. lier pregnancy seemed normal and healthy. The only thing she noticed is that the baby dn' seem to kick asfl much as the others -- or maybe not at ail. An ultrasound revealed nothing out of the ordinary. It can be sa.id that the birth of any child adds a new dimension to the life ,of the family. But when Daniel Olver was born four, years ago, it added an unexpec- ted dimension te 'the Olver f'am- ily. Daniel was born with spina bifida, which affects 1.5 of every 1,000 babiesS pfina bifida is a neural tubebirth ýdeféct occur- - ring within the first four weeks Of pregnanc.;y. The spinaT - cord fails te develop properly, result- ing in varying degrees of damage te the spinal cord and nervous systein. A damage that is irre- versible. Spina bifida is often accoin- panied by hydrocephalus, an excessive accumulation of fluid in the brain. Since- Daniel was born, Faye Olver has gone from knowing nothing about spina bifida to beinq a fundamental foroe in 0eig a Durhamn chapter of The Spina Bifida and Hydro- cephalus Association of Ontario. The chapter began three months ago. "Prom the moment I gave birth, I knew something was wrong. I just really didn't know what,» says Olver. "The doctor said, we have aj problein here; a littie hole.» Olver explains that the littie hole wasI a gap in the opine, an open Membrane that had a thin cover- ing over it. She estimates the gap te have been up te three inches. «The doctor called the pediatri- cian who made the chagnosis. The- family doctor didn't know what it was. «That's- when devastation hap- pens, says Olver. "They sent hm (Daniel) te Sick Kids (hospi- tal We had te siM papers and surgery had toIe be thin 24 hours. e sent a telegramn telling them they could operate. They operated the next morning. You feel like your baby bas died,» DANIEL OLVER, 4, takes a break by playing guitar. Born with spina bifida, he's coming along nicely despite a somewbat shaky start. Fr.. P»m photo Spina Bifida & Hydrocephalus >Associatioei cf Duram Région Purpoee. - te find causes of spina bifida and hydrocephalus - te provide better treatment of enliance the quality oflife for the faznily -te educate, the, public sector about spina bifida and hydrocephalus - te, achieve growth and development Of the association. Membership: 22 Contact: Faye Olver 725-6186 «You are your child's advo- cate,» says Olver. .«You have te, be out there working for your child. It's because you have te, do it. Out of love. I woitdn't have chosen it. But he's worth it. "People with spina bifida can have a normal lifespan and become contributing members of society,» says Olver. «The cause of opina bifda is unknown. 'Researchers believe it may be related te genetic or environmen- tal factors. Treatinent is urgent to. minimize further neurological damage and infection.», Olvers sees the Durham chap- ter as "Imore than just a social group.» Its members intenýd to educate the rublic and provide emotional an* moral suPport to parents of babies with spina bifida and hydrocephalus. The execu;tive is currently exa- mining the coste involved :hA starting up a newsletter which will play, a significant role in keeping the public informed about local events -and regionalI developments. ExÈecutive members alo plan to- learn more about a parent- to-parent support' networking group. Olver hopes to eventually establish contacts with'persons emplpye i ocal hospitals to help hink new parents with eit ing support, circles or with indivi- duals for parent-to-parent.coun- selling. Tis spport could ,be .ey helpful" durinîg the difficuit times immediately following the birth of a child with opina bffida Over is. currently working closely with Grandview- Treat- ment Centre which has several prograins for special needs chul- dren. As well a program is ini the works, a «duper Bear» program to teach life skills to youngsters with spina bifida. She also wants to see things done for adults with spina bifida. «Alot of the phobia, is going away with ýdisabilities of any kind,» says Olver. «We want our. people to- be acoepted into the- community (and, or the. coin- munity) to see what they can do.» Remember that dream yo had i tsme, your conscience. Liighere in your dreams is lilce havmng passes to the word"smot ecitngmovies... .with you and me in the starring roles! 1- Sometimes you're the monster that swallowed the Universe... .or the ïast of the great romantics.. .and' some- saïs Olver. trnes youre a nero -acomg exrraoramary tnmgs ana maxmug Saturday morning we drove people's lives better.ý up te, Sick Kids te see hixn. He P was eveopig hyrocphaus.My very favourite movie is the one where you reach He then needed surgery tep ultin deep within us and change the world, simnply by givng time a shunt.» Olver explains that a and money toh1 the people around us. shn sa type of tube that acte;a taae? rs epn shn sAnd like getsas you make gepn causes you as a drainage tube for the bra*nai which, with hydrocephalus, fillscreaotooesy with liquid. Could we wthhtoniight Daniel was only home six weeks when he developed meningitjis, and at the tender age . of two mnonths had surgery for the third time.- Toda, Daniel-leads a very active l&e. He is paralyzed from the waist down, but gets around with the use of a wheelchair and a walker. Olver bas made it a other children and. adulta withImgeisantolpogm spina bifida get ail the help they oecuag wgad oute ýneed md.lçqa4 ~ cieadf 1 1171 ,1l ,11ý