Cystic Fibrosis Community newsletter • APril • 2013 Auckland IN THIS ISSUE COMMUNITY TOGETHERNESS And fun CF COMMUNITY COMES together for ‘Ports of AuCklAnd’ round the BAys ‘there And BACk AgAin’ - 2 hoBBit wishes grAnted BACkPACker runs length of nZ for CfnZ - PArt ii CliniC news – JAn tAte keePs us uP to dAte with ChAnges At stArshiP Adult Profile – sArA wArren tells us ABout living life with Cf Members of Team Brody meet some of the ‘Shortland Street’ cast and crew who ran for CF Auckland in the ‘Round the Bays’ fun run Starship respiratory physiologists, Mailyn, Shelley, Emily and Cathy, with their ‘lung’ biscuits made by Emily Auckland Cystic Fibrosis Association, PO Box 13385, Onehunga, Auckland 1643, New Zealand. [email protected]Editor: Wendy Edmondson Keegan and family meet with Peter Jackson at the ‘Hobbiton’ set in Matamata
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Cystic FibrosisCommunity newsletter • APril • 2013
Auckland
In thIs Issue CommunIty togetherness And funCF CommunIty Comes together for ‘Ports of AuCklAnd’ round the BAys‘there And BACk AgAin’ - 2 hoBBit wishes grAntedBACkPACker runs length of nZ for CfnZ - PArt iiCliniC news – JAn tAte keePs us uP to dAte with ChAnges At stArshiPAdult Profile – sArA wArren tells us ABout living life with Cf
Members of Team Brody meet some of
the ‘Shortland Street’ cast and crew who
ran for CF Auckland in the ‘Round the
Bays’ fun run
Starship respiratory physiologists, Mailyn, Shelley, Emily and Cathy, with their ‘lung’ biscuits made by Emily
Auckland Cystic Fibrosis Association, PO Box 13385, Onehunga, Auckland 1643, New Zealand. [email protected] Editor: Wendy Edmondson
Keegan and family meet with Peter Jackson at the ‘Hobbiton’ set in Matamata
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Ports of AuCklAnd ‘round the BAys’ fun run surPAsses All exPeCtAtions. Total so far: $37,723.10 with more to come
During the 2012 Awareness Week our then co-chairperson, Amanda Blakey, was collecting at Sylvia Park shopping Centre when she was approached by Brian Stocking, chair of Howick Lions Club and grandfather to a PWCF. During their conversation he casually suggested we try the Ports of Auckland for a grant. Little did we think at the time that this would lead us to playing a large part in such a huge Auckland event. Amanda made enquiries and set the ball in motion and here we are, having had a great community day out as well as raising
a lot of money to enable us to keep supporting our members. We are very grateful to Ports of Auckland and Fairfax Media for choosing us to be a charity recipient and to Jody and Cassia at PR Partners for helping us achieve awesome media coverage. Big thanks are also due to our community who gathered teams together from their families, friends and workplaces; organised fundraising; gave their stories to the media; designed T-shirts; sourced food and furniture for the BBQ and helped out on the day – YOU ROCK!
Go Team Jack and Kelea! – by Jo Ringer
When it was confirmed that the Auckland CF Branch had been chosen as one of the charities to receive benefits from The Ports Of Auckland ‘Round The Bays’, Anthea and myself decided this was a great opportunity to stand up and run/walk the 8.4km for our kids Jack & Kelea.
We had so much positive response from family and friends that TEAM JACK & KELEA took off!!
Thirty seven lovely special people brushed off their trainers, on a very early warm sunny Sunday morning, to support us and our CF community. Each team member received a team vest, kindly sponsored by Kindercare Learning Centres. They looked fantastic and made us stand out in the crowds.
[There was] such a phenomenal turn out, and [it was] so great to meet and greet many familiar CF families. The walk/run went really well although a little hot! Great fun was had by all, a fantastic positive experience. Anthea and myself are so grateful to all our friends and family, far and wide, that have supported us. We’ve been overwhelmed by the tremendous outpouring of generosity and encouragement that we’ve received in support of not only our kids but CF Auckland branch.
To date TEAM JACK & KELEA have raised an amazing $2,661.10!!! .... and are still receiving donations. Thank you Thank you...we hope we get chosen as a preferred charity for RTB 2013!
Round the bays photo from above – caption: 70,000 runners and walkers completed the 41st ‘Round the Bays’ fun run
Team Portia – by Adele and Glen Tonks
Cystic Fibrosis hit our family hard when the newest addition to our family was diagnosed 15 months ago.
During the first six months, the weekly Starship visits would predominantly involve a thorough counselling session from the amazing Starship team, numerous calls to Jan Tate’s mobile for constant reassurance, and a very large box of tissues. Mirjana, our Respiratory Specialist, would always assure us that in time Portia would be running around like a normal gorgeous toddler down the corridors, referring to her as ‘such a beautiful lady’ - and how right she was.
We are on the very beginning of our journey and for us the Auckland ‘Round the Bays’ was a perfect way for our family to come together in support of CF. We ran, walked, and at times jumped, together as ‘Team Portia’. All up there were 20 of us - Glen and I, Portia’s sisters and brother, cousins, aunties, uncles, her Oma and Opa and a few close friends.
It felt such a privilege to be part of something so close to our hearts, and to have so much support from our friends and family for our ‘Princess Portia’.
meet the teAms And heAr their stories:
Team Portia meet together before the run under the ‘CF Auckland’ banner
Team Jack and Kelea pose with stars and crew from TVNZ’s ‘Shortland Street’
the ‘After PArty’No big event is complete without an ‘after party’ and the CF Auckland ‘Round the Bays’ team were determined to live it large.
With the numbers in teams and the number of teams growing it soon became clear that that we would need more than one BBQ site. As an official charity of the ‘Round the Bays’ event we were fortunate to get two free sites in Glover Park.
True to form, the community gathered round to support us. 400 Sausages were kindly donated by Grant Hafford, owner of ‘The Mad Butcher’, Glen Eden; Thanks go to Raewyn Saxon for organising this and Natalie Hibbert for delivering the sausages. The Fraser family lent us a large marquee which proved invaluable
to provide shade on such a gorgeous hot sunny day. Robyn Somerville sourced 250 drink bottles, kindly donated by Certified Builders Association of NZ, which were filled with water and given away. Jill Thorrat provided lollies. Thanks go to the Eliotts, Edmondsons and Blakeys for helping at the BBQ site handing out sausages and drinks bottles.
Physiotherapist, Helen O’Connor, who has a cousin with CF, and her colleague Mark Quinn, kindly came with a massage bed each to tend to weary runners (and weary co-ordinators at the very end). Once the first runners arrived they were
kept very busy on what was an extremely hot day.
We were a little surprised to be rung up by Radio Live during the BBQ and then approached by a reporter from the ‘NZ Herald’.
It was inspiring to see so many members of our community and their family and friends supporting them. A real bonus was having the Shortland Street cast and crew who not only ran for us but also joined us at the BBQ, helping raise our profile and proving a real hit with our families (as well as the groups around us).
Rich Blakey serves members of Team Chloe
Wednesday 8th May 2013lido TheaTre , epsoM
Glass wine 8.10pm, movie begins 8.30pm
TickeTs $25
CF Auckland invite you to a special screening of Song for Marion
Please contact Wendy edmondson, CF Auckland Branch Coordinator on ph 636 0827 or [email protected]
Morgan Storrie, who set up Team Chloe, and Vaughan Somerville get treated to a massage courtesy of Helen O’ Connor and Mark Quinn
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ronAld mCdonAld fAmily retreAt, rotoruAThe Ronald McDonald Family Retreat® in Rotorua provides one week of free holiday accommodation for families including those with children with CF (up to the age of twenty) or adults with CF who are parents.
Aware of the impact that having a condition such as CF can have on families, Ronald McDonald House Charities NZ, along with various community groups, created the Ronald McDonald Family Retreat.
The houses offer comfortable, well positioned spaces for families to enjoy a holiday together. An oasis of calm amongst the surroundings of the Family Retreat helps to create a relaxing family holiday. This much needed facility is the first of its type in New Zealand and as well as offering some families the chance for a holiday together, it also gives families the chance to re-energise and gain strength
“I want to express my gratitude to everyone involved in making this facility possible for families in need, everyone has a different story and a different road they are travelling, but everyone needs time out and time as a family to re-energise, reflect and remember. This retreat shows us that in life there is compassion and caring wonderful people. Thank you so much” – From the Paul Family
The Family Retreat consists of two houses which are situated on the shores of Lake Rotorua. Both houses are identical and are located on the same property. They have been designed with families in mind and are wheelchair accessible. They are fully equipped – all families need to bring apart from themselves
is food and other personal items that they may require during their stay.
The ground floor has open plan living areas and includes a large bedroom with a sliding wall so, in the event of a family member being unwell, they are still able to interact with the family. The two other bedrooms are located upstairs. The accommodation sleeps 8 people comfortably with 2 double beds, 3 single beds and a rollaway. Adjacent to the kitchen and dining room is an outdoor covered patio containing a table, chairs and a BBQ.
Support by the local community is strong. An Attraction Guide containing various deals and offers by local tourism operators and retailers is given to each family upon confirmation of their stay.
If you would like more information or would like a brochure, please contact the Booking Administrator on 0800 112282 or via email at [email protected]
my end of yeAr sChool triP to CAmP AdAirBy Jack
Hi, my name’s Jack, I’m 11 and I’m going to tell you about my Year 5/6 trip to Camp Adair. Before camp I was very nervous because I had to do all of my medicines by myself the whole week, which meant getting up before and going to bed after everyone else, but in the end it was okay. My CF didn’t hold me back from doing almost all of the activities which included a 6 hour trek through the bush (the First Aider packed lots of fluids and chocolate), cargo net climb (my
favourite), Rambo bridge (very high up), tightrope walking (while swinging from vines), the climbing pole, the flying kiwi, and bridge building. The only things I wasn’t allowed to do were the confidence course, because it involved crawling through stale muddy water on my hands & knees & the mud slide.
If any other CF kids get the chance to go on a school camp I’d recommend they go for it!
Q & A time with melindA CoomBes, fieldworker for fAmilies of Children with Cf
Q: Can CF cause teeth discoloration and what can I do about this?
A: There are many reasons that teeth may become discoloured. However, a number of studies have shown that children with CF have more defects in the enamel of their permanent teeth than children who do not have CF. Early and regular dental visits may
prevent such defects.Q: Can I purchase a tropical fish tank if I/my child has CF?A: Fish tanks could pose a risk to people with CF unless they
are kept very clean and are maintained properly AND the person
responsible for cleaning the fish tank does not have CF. Always take precautions around warm water because it provides an easy environment in which bacteria can grow. Even if the tank is cleaned regularly it is best if PWCF do not have contact with the water.
Always consult your CF Health Team when in doubt. Melinda Coombes would like all families to know that she can be contacted at any time if you feel like you need more support from the Branch or would benefit from a home visit, for whatever reason. Melinda’s contact details are on the back of this newsletter.
Adult Profile: sArA wArren Sarah acknowledges her CF and manages taking care of her health but sees CF as a minor part of her life. Here is her story:
My name is Sara Warren. I am 33 years old and have a mild form of CF in the lungs only. I was diagnosed at 8 years old. I have been married to my husband Matt for 6 years now, but we have been together for over 13 years. Matt and I have been living in Tuakau for the last four years, with our two cats. The rest of my family consists of my parents Kelly and Nina Smith, and my younger sister Rachael.
Currently I am also living with a broken right leg (both bones) which is making doing what I usually do a little harder. Luckily Matt and my family have been a great help driving me around, and making sure I’m okay.
Currently I am working part-time (due to the leg), but normally I work full-time as a Customs Broker with NZ Post. My job is covering the legal side of importing and exporting products for our regular clients. I have studied and sat exams to get into this position, and regularly have to keep up to date with both NZ Customs and Ministry of Primary Industries (the old MAF) rules and regulations. I see a great deal of products each day ranging from books ordered through Amazon, clothes ordered on NZ Sale to car parts, machinery, etc so each day is different.
My CF does not have a huge impact on my life. I still have to do physio and have my medications, but other than that nothing additional.
I have found being up front about the CF to everyone very useful, as it helps them understand what I go through on a daily basis, but also what could happen to me. When I started college, I got up and spoke to the school assembly. Each job I’ve had, I have told the whole team. This way everyone knows the situation from the get go. The only person I didn’t tell straight away was Matt, I ended up telling him six months after we started dating, he was a little disappointed at the time but could understand the reasoning behind it.
I enjoy doing reading and photography; I like walking around gardens and looking at the design aspect of each; travel (I have been over most of NZ plus travelled to Australia, New Caledonia, USA, England, Ireland, Scotland and Wales); I enjoy playing, coaching or umpiring netball when I am fit.
While I haven’t been into hospital for almost five years now for CF, [when I do] I always have my family visit and bring me in some home cooking occasionally. NZ Post have been great about giving me time off for any health issues I may have, which makes things easier.
When I was a kid and teenager I just wanted to be normal like everyone else. Luckily mum and dad made me go out and do stuff so I wasn’t missing out on anything. I have never used CF as a reason not to do something, I may not want to do something, but it will never be due to CF.
CF is a very small percentage of my life. Recently I was joking saying I would rather have CF than a broken leg, just because I know what can be done and how to control the CF whereas I can’t do much and have to rely on others to help me until my leg is healed. I enjoy my independence a lot, so having to ask people for help has been a little bit hard.
CF has given me opportunities that I may not have had, such as going to Outward Bound and travelling to Disneyland with Koru Care when I was 11. But most of the opportunities I’ve had have been because my family have believed in me enough to [encourage me to] go out and do things I wouldn’t normally do, such as having a gap year in the UK working as a matron in a boarding school looking after twenty one 12 and 13 year old boys.
Ronald MacDonald Family Retreat has a clean modern interior and superb views of Lake Rotorua
Jack completes the abseil at Camp Adair
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CF GAllERy NEwS APril 2013
Matthew with sister and bunny
Kassie showing her biggest smile when Melinda visits her at home
‘Where did you get that hat, Harvey?’
Tayler gets some practise in on his inflatable jet ski
Max from ‘Team Max’ models the team T shirt
Tania Fawcett gets a well deserved
massage after her 8.4km run
Young members of Team Leo model the team T-shirts with Leo’s photo on them
Sarah Hitchings and partner, Steve Foster,
look remarkably fresh after their run
Members of Team Chloe pose with their
‘Just Breathe’ lung design T-shirts
‘Princess Portia’ all dressed up for the ‘Round the Bays’ Run
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British BACkPACker runs the length of nZ in Aid of CfAnZ PArt iiDan Burgess, the intrepid runner who completed his journey on 7th December, having taken only 37 days to travel 2200km, kindly sent us the second instalment of his story from the airport on his way back to the UK with wife (and support crew) Sarah. Here he talks us through the lows and highs of his journey.
Lows: There were plenty... but I am a bit of a moaner. Only being able to do 36 miles on the second day having done 50 on the first, felt like a real low point at the time. Now I look back at it, it seems ridiculous that I had been disappointed with ONLY doing 36 miles. In fact... 36 miles became pretty much my daily average for the run. It’s always good to aim high though! In the first 10 days I had some really weird aches that made my knees creak and groan a bit, which was a bit worrying. I could feel that the tendons and muscle just wasn’t sliding around in the way it usually would when you bend and stretch your legs... almost like a hinge that needed some extra grease. I had pains that would usually stop me from training and make me go to the physio, but as this was an ‘all or nothing’ type affair, I just ran/walked/hobbled through it. Then all the problems began to gradually fade away. It was as though I’d pushed through a barrier that previously would have stopped me dead in my tracks. It was great to have experienced that first hand, because I now know that I’m capable of quite a lot more. Weird, unusual and sometimes intense pain isn’t always a sign of a show stopping injury it seems.
Highs: The biggy was obviously the finish. It was such a huge mix of emotions when I finally got to the lighthouse at Cape Reinga, after so much hardship. Other than that, the stretch of coast going into Kaikoura was stunning. I also really enjoyed running the desert road on the way to Taupo, the day after Mt Tongariro erupted. I did about 43ish miles that day and it was an awesome stretch of road. As you descend off the plateau, it takes you through some really lush vegetation. I ran through a really loud thunderstorm and with the volcano in the distance, it was really atmospheric. Being joined on the road by people that had given up their free time to run with a total stranger has to be high in the list too... Words can’t express how much of a boost their company gave me!
I had 6 pairs of ultra light inov8 shoes donated to me by The Outdoor Warehouse (a Lake District based online gear company). By the end of the run only 2 pairs were heading straight to the dustbin, although that was only because the uppers had holes in. The rubber on the soles was still absolutely fine.
Help & Support: In 37 days we slept in our skanky van just twice. All the other nights were in rooms donated by hotels/motels or in peoples homes. Honestly... the generosity and enthusiasm for what we were trying to achieve was mind blowing and made a huge difference to my state of mind. It’s hard to wallow in self-pity when everyone is being so nice to you!
Calorie intake/food etc: When I arrived in New Zealand (on the back of 6 years of office based slobbery) I weighed 75kgs.... on the last day of the run I weighed 61kg, despite eating... well, pretty much everything that got put in front of me. I tried to eat proper meals and fruit, but sometimes the best energy hit came from junk food of the lowest order. I also had vitamin supplements daily as I guessed that would be a good idea. I only got sick once in Taupo where I had my only rest day, but it was only a bit of a cold. I only did it as I didn’t want to risk it becoming something bigger that might actually stop me running for a longer stretch. When I ran the following day I did feel pretty rough in the morning, but by the afternoon I was back on it.
Dan arrived at Cape Reinga at 3.22pm on Friday 7th December, having run the equivalent of 53 marathons in 37 days.
Rebecca, mum of Emily, is a cousin of Sarah and Dan’s friend, Jess, who first suggested that Dan might run to raise money for CFNZ. Rebecca and her family hosted Dan and Sarah for a night when they passed through Auckland and organised a massage for him. She says of Dan:
These are our incredible friends Dan and Sarah. I can honestly say that he is the most amazing, inspiring, down to earth guy we have ever met. Our family has been touched by his strength and mental ability to archive this massive feat.
Dan and Sarah Burgess with supporters at Cape Reinga at the end of their epic journey.
Dan and Sarah with Emily on day 29 of his 37 day adventure
BouQuets:We wish to recognise with thanks, the
support given to CF Auckland Branch from the following organisations, companies and individuals:
Ports of Auckland and Fairfax Media – for choosing us to be a main charity for the Round the Bays fun run, giving us a $15,000 grant to help us provide essential medical equipment as well as a fantastic opportunity to bring our community together for a fun day out and raise even more funds.
Cassia and Jody at ‘PR Partners’ – for their excellent work promoting media interest in CF and for their help and advice to the branch co-ordinator.
Helen O’ Connor and Mark Quinn – for giving up their time to provide massages for the tired walkers and runners.
Grant Hafford, owner of the ‘Mad Butcher’, Glen Eden – for providing us with 400 free sausages to feed hungry runners and supporters.
Anthea Wendelborn, Jo Ringer, Amanda Blakey, Matthew Ryken, Katherine Fraser and Sarah Hitchings – for sharing their stories in Interviews with the newspapers, on radio and on television.
Cast and crew of “Shortland Street’ organised by Rachael Keereweer and led by Jacqueline Nairn (AKA Wendy Cooper) – for running, mingling with our community and the other charity recipients around us, and giving us some great media and photo opportunities.
Runners, Walkers, Supporters and Volunteers: whose hard work, motivation and enthusiasm all helped to make the ‘Round the Bays’ fun run a really enjoyable and successful day out for CF Auckland.
UPS - We are grateful to have the huge multinational UPS supporting our small NZ charity. Amanda and Robyn secured funding from UPS to bring Alexandra Quittner to NZ on 30 April to deliver her two-day ICARE training to 20 health professionals (our own Field Work staff included). This project is being managed by our National Office.
Good in the Hood - Thanks go to ‘Z’ petrol station, Milford, which has donated $1000 through their ‘Good in the Hood’ community fundraising scheme. Thanks also go to those in our community who voted for us when getting their petrol.
BrAnCh newsRound the Bays
2012: A lot of Branch time was spent co-ordinating aspects of the Round the Bays run and BBQ. You can read all about it on page 2 and 3 of this newsletter
and see even more photos on the page 6-7 Gallery
Entertainment Books 2013: 2013/14 Entertainment Books are now available. Please type in this link: https://www.entertainmentbook.co.nz/orderbooks/940a34 or contact Wendy at the CF Office and I will forward the ordering link to your email.
2013 Australasian CF Conference, 17th to 20th August: This will be held at the Rendezvous Hotel. The Auckland Branch is applying for grant funding to cover costs towards registrations for parents or Adults with CF and their partners. However, if you wish to attend it may be worth putting money aside as grant money is not guaranteed in today’s economic climate.
Coffee Morning: The next ‘coffee morning’ will be some time in June, so please check your emails from the Branch. These coffee mornings provide an opportunity to meet with other parents and get support and make friendships with people who understand your concerns.
CF Auckland Branch co-chair, Amanda Blakey resigns: Amanda has been co-chair with Anthea Wendelborn since June 2011. She has been a very
‘hands on’ chairperson and will remain on the committee but is now hoping to spend more time on her other commitments. Jill Thorrat has been welcomed into the role of co-chairperson.
Movie Night: After the success of last year’s showing of ‘Hope Springs’ we have arranged a pre release showing of ‘Song for Marion’ for Wednesday 8th May at the Lido theatre in Epsom. Cost is $25 and includes a glass of wine at 8.10pm and the movie at 8.30pm. Please see page 3 for more information.
Branch Volunteer Vacancy: 1. Website support: Are you proficient
in ‘WordPress’ and can you give technical assistance. Please contact Wendy at the Auckland Branch office if you can give a small amount of time to support your branch with the Website.
AustrAlAsiAn ConFerenCe17 - 20 August 2013
Rendezvous Grand Hotel, AucklandTheme: Getting Better Together
International speakersParenting support
Sessions for adult PWCFNetworking opportunities
Registrations for lay conference close on Mon 1st July*
*Auckland Branch is applying for grant funding to cover costs towards
registrations for parents or adults with CF and their partners from the
CF Auckland area. Please do not register until this funding has been confirmed. Registration forms will
be available from the Auckland Branch Office soon.
PLEASE NOTE: There are strict infection control policies for PWCF
attending the conference and these must be adhered to.
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BeAutiful Quilt A generous donAtion to kAyleeSinead Lucinsky and was absolutely
delighted with the gorgeous hand stitched quilt that was kindly donated to her 9 month old daughter Kaylee who has CF. The beautiful hand made quilt was stitched by Cathy Jones at the Aorere Night School and sent to the office over Christmas by Ngaire Bradley from Paeroa.
The quilt is pink and white with floral patches and appliquéd hearts and will make a perfect family heirloom.
Sinead and Kaylee’s daddy, Richard are taking an active fundraising role despite the relatively short time since Kaylee’s diagnosis with CF.
They gathered together a huge team of friends, family and colleagues of Richard at CSP Pacific and TSNZ for the ‘Round the Bays’ run and organised T shirts. With a very generous offer by CSP Pacific to match fundraising, Team Kaylee have raised a whopping $7397.00.
there And BACk AgAin
Thomas mingles with stars on the red carpet at ‘The Hobbit’ film premiere in Wellington
Thomas and his mum Ros had an awesome day out at the world premiere of the Hobbit Film held in Wellington last November, courtesy of Make-a-Wish. Thomas told Wendy Edmondson about his fantastic trip.
Q. Who did you work with at Make-a-Wish and what did you ask for?
Roz Tommas was the Make-a Wish person we worked with. She was great. She even organised a private tour of Te Papa for us before the Premiere. Roz kept us informed with exactly what was happening the entire time - and she organised the transport and hotel stay. I asked to go to The Hobbit World Premiere in Wellington.
Q. I hear you had an interesting mode of transport on your day - can you tell us about this?
Mum and I were picked up in a chauffer driven Maserati. The driver showed us “what the car could do” by putting his foot down along the waterfront - no cops around thankfully.
Q. What was it like on the red carpet - who did you see there?
The ‘red carpet’ experience was very cool. We shared the ‘red carpet’ with all the actors and celebrities from the movie - we were standing right next to them. I had photos taken with Elijah Wood, Dean O’Gorman, James Nesbitt and Aidan Turner - who played Frodo and dwarves respectively. They were all very friendly and happy to have their photo taken with me.
Q. What was the highlight of your day?Walking the Red Carpet was surreal. All
these faces looking at you from behind the barriers (no doubt disappointed we weren’t celebs). Meeting some of the actors who all shook my hand and posed for photos. Then [there was] mingling with the guests before the premiere with drinks and platters of food. The movie was good too!
Thomas would like to say a big ‘thank you’ to Roz at Make-a-Wish for organising his treat and to Tyler who delivered him a ‘goodie bag’.
Keegan jokes around with Peter Jackson at Hobbiton
Thanks to Make-a-Wish, Keegan met with Peter Jackson at Matamata last year and his story went out in the April 2012 Newsletter. However, due to the potential of giving away Hobbit
secrets he was not allowed to print out his photographs of Peter Jackson and Hobbiton until after the film premiered last November.
Keegan and mum, Vicky, are both big fans of Peter Jackson’s early films such as ‘The Frighteners’ and so Keegan asked if he could meet with his idol while he was is Matamata filming. Keegan said that Peter Jackson came across as a really normal guy and was happy to joke around with them. On their trip they also met Martin Freeman who plays Bilbo Baggins and Elijah Wood who plays Frodo, Bilbo’s nephew.
Make-a-Wish has been granting wishes to New Zealand children and young people for over 25 years and Cystic Fibrosis is a condition which is covered by their criteria. If you would like to have a wish granted by Make-a-Wish you can contact fieldworkers, Sally Carron or Melinda Coombes to have a discussion about this and get an application form or contact Wendy at the CF Auckland office to have a form sent to you.
CliniC news, mArCh 2013 By Jan Tate, CFCNS, Starship Children’s Health
Flu Jabs:We are heading into
the winter months where we all need to take care of our general health and hygiene. So remember to eat the right food, get
enough sleep, take the extra vitamins (if you have CF), use the tissues for a runny nose and cough, remember to wash your hands to stop the “bugs” going around AND get the Flu Vax. The GPs have the Flu vaccination available now and some families have already received theirs. I am sending a reminder letter out to all the families to make sure you all know how important it is for children with CF to get the Flu Vaccination before the winter. The vaccination may not prevent the flu but will hopefully lessen the symptoms and is recommended for all children with CF over 6months of age.
Changes to Starship wards: The 6th floor of Starship is well
underway to a new look. The refurbishment has been disturbing us all now for the past few months but we are “bearing up” as we know by the middle of 2013 there will be a brand new ward with single rooms, some with bathrooms attached. So it will be exciting for us when the building is finished and the ward opens. In the meantime, all of our patients are on 25A where it is business as usual although a little cramped. The staff are working under pressure with
the heat of the summer (all windows are closed) and the noise of the drilling but we know soon there will be a new look to Ward 26B.
Work on the Starship Car Park B:When you come to clinic during the
next 6-months make sure you park in the new car park – the one next to the Domain, and walk through the hospital to clinic OR if you park in the Starship car park make sure your child wears a mask to and from the car. Keep a mask in a bag in the car glove box – ask the staff at clinic for one. The risk of dust inhalation is small but the mask is to help stop your child breathing in any dust or debris that may be around outside the building. The mask can be taken off once inside Starship.
Respiratory Lab:Many of you will know that Emily and
Teagen from the Respiratory Lab have left us to do different roles. Emily has gone to Canada to study and Teagen has gone back to Tasmania to get married and work in the hospital. We have 2 new Respiratory trainees – Kimberley Burnett and Nicole Westrupp who you will all meet over the next few months. Emily made some “Lung Cookies” for the staff when she left – see picture. We welcome Kim and Nicole to the team.
If you have any worries or concerns about your child’s care or well-being please call me on 021 412 738 to discuss.
New ‘respiratory’ trainees at Starship, Kimberley Burnett and Nicole Westrupp
Kaylee looks adorable surrounded by her new family heirloom
the new 2013 / 2014 entertAinment™ Books Are AvAilABle now!
The Entertainment™ Book contains hundreds of valuable ‘up to 50% off’ and ‘2-for-1’ offers from many of the best restaurants, arts, attractions, hotel accommodation, travel and much more!
Please contact Wendy at the CF Auckland Branch office or check out our Facebook Fundraising page: ‘Auckland Cystic Fibrosis – Fundraising Events’ where you can click on a direct link to the CF Auckland Entertainment book order form.
Some of Team Kaylee pose for a photo after the run
Lung Function: Cathy Douglas Ph 307 4949 ext 6483#
stArshiP Cf teAmThe CF team is available during the hours of 8am to 4pm. If you have an urgent problem outside these hours either telephone your GP or call Starship and contact the paediatric medical registrar on 307-8900 or 379-7440 or visit www.starship.org.nz
Respiratory Consultants: Dr Margaret Wilsher, Dr John Kolbe, Dr Mark O’Carroll, Dr Sally De Boer
