Kapiti Observer : July 18th 2011
5 KAPITI OBSERVER, JULY 18, 2011 Quality Furniture & Furnishings 04 298 5927 17 Seaview Road PARAPARAUMU BEACH FREE CURTAIN MAKING ON ALL DRAPE FABRICS CALL NOW FOR AN APPOINTMENT WE COVER THE TOTAL WELLINGTON REGION BLINDS 30% 20% off Solid Roller Blinds Selected fabric ranges off Sunscreen Roller Blinds, Venetian, Vertical and Wooden Blinds DEAL WITH THE EXPERTS Winner NZ Retailer of the Year FREE INSTALLATION OF ALL PRODUCTS You re invited to a Fantastic Networking Event! Kapiti Tenpin Bowling 1 Te Tupe Road, O SH1, Paraparaumu Come and join us in the Tenpin Bowling Centre. As always - great networking and hospitality - and this time with an opportunity to try your hand at bowling - after 6.30pm Come prepared if you d like to have a bowl! Bring business cards for a door prize RSVP essential - book now: firstname.lastname@example.org or 04 904 9688 by Monday 25 July Cancellations after this time and 'no-shows' on the day will be charged. Substitutions permitted. 2756565AA BUSINESS AFTER FIVE Wednesday 27 July 5.30pm-7.00pm HOLIDAY WHAT'S ON MONDAY JULY 18 Through The Glass Looking, a 20-minute circus; 11am and 2pm, Tuesday 2pm only, Wednesday to Friday 11am and 2pm. Coastlands Garden Court. TUESDAY JULY 19 Harriet the Clown, 11am Waikanae Library, 2pm Paraparaumu Library. Bookings essential, Paraparaumu phone 296 4887, Waikanae phone 296 4770. Ronald McDonald Show, 11.15am, Coastlands Garden Court. WEDNESDAY JULY 20 Harriet the Clown, 2pm, Otaki Library, bookings essential, 06 364 9310. SATURDAY JULY 23. Kapiti Ballet Society, dance competitions, Southwards Theatre, until Tuesday. MONDAY JULY 25 Charlotte's Web, Academy of Dramatic Arts Production, 1pm, Coasters Musical Theatre, Hinemoa St, $5. Also 11am and 1pm Tuesday and Thursday and 11am, 1pm and 6.30pm Wednesday, $8, bookings email@example.com. Maths is Fun, Horowhenua Library Trust, Shannon Library, daily until Thursday, finale party on Friday. Cookie Creations, for children aged three to 12 with parent or guardian, 10am to 2pm, Coastlands. Book at the Customer Information Centre. TUESDAY JULY 26 Paper plane flying competition, 11am, Waikanae Library; 2pm, Paraparaumu Library. WEDNESDAY JULY 27 Paper plane flying competition, 2pm, Otaki Library. Couple speak about child's rare disorder Dad and daughter: Kere Nichol with daughter Jenna-Faith Nichol who has the rare genetic disorder Noonan syndrome. Jenna-Faith fights one- in-a-thousand genetic disorder on journey to walk and talk like all the other kids. By JOEL MAXWELL The parents of a Kapiti child with a rare genetic disorder that strikes muscle development have spoken out to boost aware- ness of her little-known con- dition. Jenna-Faith Nichol is almost three but her muscles have been so slow to develop that she still can't crawl -- instead forced to pull herself along the ground on her bottom. Even her ability to speak has been hit by her condition, Noonan syndrome, as her vocal chords operate using muscles. Dad, Kere Nichol, said he and wife Emma first noticed some- thing was wrong when Jenna- Faith virtually stopped growing about three months after she was born. However it took another agon- ising 15 months of uncertainty and medical appointments before doctors were able to identify the cause as Noonan's. Finally it was a genetics expert who said Jenna-Faith has the syndrome -- with the little girl having an even rarer form of the disorder that was spontaneous, and not inherited from her parents. Rather than being shocked, Mr Nichol said there was actu- ally some relief that their daughter's problems had finally been diagnosed. Isaid OKshe'sgotit. . .is she going to get married, have kids, leave home, get a job?', and the genetics expert said yes' to all of those.'' He said ultimately Jenna- Faith should reach all the nor- mal milestones, but three or four years'' behind other chil- dren. Small stature, low muscle growth and potential serious heart defects are symptoms of the disorder. Mr Nichol said Jenna-Faith's pediatrician is confident she does not have any heart problems -- but getting her to take the final tests to confirm this haven't yet been possible. Ever since she was three months old, Jenna-faith has undergone a battery of medical tests that have left her incred- ibly wary of strangers, he said. Because any stranger is there basically to poke, to prod, to test, this, that and everything else.'' Mr Nichol was keen to speak to the Kapiti Observer to raise awareness of his daughter's Noonan syndrome. [It's about] Just letting people know what it is, because we'd never heard of it. I guess it's about just letting people understand it is out there . . .weonlyknowofoneother person in the Wellington region [with Noonan Syndrome].'' The Nichols have also started a Noonan's group on Facebook where they have linked with a small number of parents around New Zealand. Mr Nichol said they were counting their blessing that Jenna-Faith was not hit as hard as some others with the dis- order, but even so, when she grows up she will face her own tough decisions. She will have a 50 per cent chance of passing on the con- dition to her children. However those decisions are far in the future for Jenna-Faith who is still busy taking the journey, literally, towards her first steps.
July 14th 2011
July 21st 2011