Heartline Issue 97 January 2016
Level 1, 60 Grafton Road, Grafton, Auckland Phone 09 377 9950 Fax 09 377 9954 info@heartnz.org.nz
Jetts Treadathon
Family Support Team
Scholarship recipients
Thank You!
Strengthening families
The sky’s the limit
Cycle Challenge
Kids Heart Riders
www.heartnz.org.nz
A Message from Rob
What a year for Heart Kids! 2015 has brought many exciting
developments for our organisation and it’s been a pleasure to work with
our fantastic branches, committees, members, volunteers and dedicated
supporters all around NZ.
We have grown our family support services
and resources at Starship Hospital and
have worked with Auckland Hospital to
establish new support services on the adult
wards for our teen and adult Heart Kids as
well. We have also been working closely
with the national medical and surgical team
on a number of fronts.
With this great team, we have been to
the Minister of Health Jonathan Coleman
and spoken to the Ministry of Health
to help lobby for more funding for the
national medical service to reduce our
surgical bump backs. We are also very
hopeful that these discussions will help
raise the importance of funding for the
better transitioning of our Heart Kids from
Starship to Auckland Hospital in their
vulnerable teenage years.
Heart Kids have worked hard to strengthen
our all-important relationships with all
our corporate funders over this year
and we thank them for their ongoing
commitment to Heart Kids. As we receive
no government funding, our corporate
partners are very important in giving us the
support we need, to then provide you all
support when and where necessary.
September and I wish to thank everyone
for making this happen. Our participant
survey feedback was excellent and I would
encourage everyone to join us in 2017 for
the next conference.
much needed help and support when you
need it most. I’d like to thank them very
much for what they do - their roles are
challenging and take very special people
to be able to provide this sort of support at
very stressful and complicated times.
Heart Kids are also involved with the
New Zealand compulsory new born
pulse oximetry testing pilot. This will be
undertaken in the Auckland and Rotorua
areas once funding is received. This pilot
will involve midwifes and all the Hospitals
and look to oximetry test all new born
babies for a year period. The report then
will go to the Ministry of Health to seek
funding to make it compulsory throughout
New Zealand. We lose 5 babies a year in
New Zealand because of late diagnosis of
CHD and this simple test will reduce this.
These are just some of the good things
that our team at Heart Kids are doing
throughout New Zealand, and I’d like to
take this opportunity to thank you
for all that you have done this year.
Special mention to our very
dedicated team of Family Support
Workers who work tirelessly
providing all heart kids and families
The Heart Kids National Support Office
team put on an amazing conference in
Camp Brave Hearts
Not long to go till Camp Brave Hearts 2016! We’re super excited
about this five-day camp and are ready to bring the best ever
experience to our little hearts.
We also cannot do what we do without
all our volunteers, from the board level to
branch committees and to everyone whom
just helps out, thank you so much. You truly
are making a difference.
On behalf of all our Heart Kids team
throughout New Zealand I wish you and
your families a very Merry Christmas and
enjoyable holidays and bring on 2016!
Rob Lutter, CEO
Mark your diary
18 – 22 Jan Camp Brave Hearts 2016
11 March Heart Stopper Challenge Auckland Central
19 March Heart Stopper Challenge
Bay of Plenty
18-22 April Camp Teen Beat
28 May
Annual General Meeting
20 June
Patron Teen Scholarship
applications open
23-25 July
Distant Drums
31 July
Memorial Service
1-6 August
Awareness Week
5 August
National Street Appeal
This year’s camp will be held at Carey Park, located in the foothills of the beautiful Waiktakere Ranges in Auckland. Carey Park has a wide
range of facilities including an awesome water slide down through the bush into the stream, a great flying fox, the traditional climbing
walls, canoes, burma trails and much more. We are excited about the change of location and venue and are sure the camp experience
will be as good as ever.
We can’t thank Angels for Children Trust, Endeavour Trust, North and South Trust, and Pelorus Trust enough for their generous grants
that have made Camp Brave Hearts possible. Also, a huge thank you to Guthreys Coachlines for complimentary bus services for the trips
between Auckland Airport and Carey Park.
We are looking forward to catching up with many of you at camp!
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The Sky’s the Limit
Donate online at:
www.heartkids.co.nz
Patron Teen Scholarship recipients
HUGE congratulations to our heart teens Brittany Glassey, Bronwyn Ward, Chelsie Parsons
and Angus Fulford for being awarded the Patron Teen Scholarships. All of them have
outstanding talent and have done extremely well in their chosen areas of interest. The
Board of Trustees are extremely impressed with their positive attitude, eagerness to
learn, determination to succeed and commitment to Heart Kids.
Brittany has been involved with Heart
Kids Canterbury for most of her life. She
and her family have always volunteered at
events organised by the local branch. The
18-year-old is passionate about design and
her exceptional talent in this area has won
her numerous
awards at both
local and national
levels. She is
the Canterbury
Young Designer
of the Year;
national winner
of the HETTANZ
Fashion Awards;
and second
runner-up in
the Newmarket
Young Fashion
Designer Award
Brittany Glassey
2014 just to name
a few. Brittany
plans to gain a Bachelor’s Degree in
Design, majoring in Fashion with a minor in
Fashion Business. Her academic excellence
has already qualified her for open entry
for university. She will use the scholarship
to fund her university study, helping her
realise her potential.
Many Auckland heart families and young
adults would have known Bronwyn and her
family as they have been actively involved
with the local branch for a long time. She
is also on the branch committee helping
to organise Teen and Young Adult events
for Auckland members. This amazing
young woman has
endured five openheart surgeries, the
first one at just 7 days
old. Growing up with
a heart condition can
be tough at times but
it didn’t stop Bronwyn
from continuing with
her normal life. She
is actively involved
in school netball
and has played,
Bronwyn Ward
refereed, coached and managed teams.
Her childhood experience as a heart kid
has helped form her career goal. She has
enrolled at the NZ Career College for a
foundation course in Health, the pathway
for her to becoming a paediatric cardiology
nurse. She will
use the prize
money towards
her tuition.
Chelsie was
born with
complex
CHD and had
received three
open-heart
surgeries to
correct the
defect. She still
copes every day
with pulmonary
hypertension, a
serious and irreversible consequence of her
heart condition but she never lets it hold
her back. Her passion for Ten Pin Bowling
has won her a 2nd place in the All Stars at
the National Team Champs in 2014, earning
a place in the NZ Team and onto the NZ
squad to represent New Zealand. She has
also been invited to attend an international
tournament in Malaysia and we are pleased
to know the scholarship will help fund her
trip to attend this important competition.
Chelsie is also passionate about Mini
Stock racing and has
ambitions for her
future at Speedway.
Chelsie Parsons
She is a valued member of Heart Kids
Wellington who always helps out at Heart
Kids events such as National Appeal, Heart
Stopper Challenge.
Like the other three recipients, Angus and
his family have been a part of Heart Kids
since he was diagnosed with a huge Atrial
Septal Defect, hole in the heart, that had
gone undetected until he went into heart
failure at the age of 3 years and 9 months.
The Karamu High School Y13 student
works hard and always strives to give his
best in whatever he pursues. He has been
actively involved in cultural and sporting
activities and has also attended the Massey
University Engineering/Technology Camp.
He aspires to become an engineer and
to use his knowledge and skills to help
develop cities throughout New Zealand.
He plans to study Engineering at The
University of Auckland and the scholarship
will be used to fund this.
The sky’s the limit for our scholarship
recipients and we are pleased to be able
to be a part of their journey by providing
them with the practical, emotional and
financial support they need. All the
very best to their study and personal
development!
Angus Fulford
January 2016
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Support for Heart Adults in Auckland Hospital
We’re very excited about the appointment of Ashley Mills as
Senior Hospital Family Support Worker, a new role primarily based
in the adult cardiac wards at Auckland Hospital.
Many heart kids and families would have known Ashley from
when she was the Family Support Worker for Central and West
Auckland, a position that she held with the Auckland branch
for three years prior to joining the National Support Office in
November.
Ashley’s primary focus is to establish Heart Kids’ presence on
Ward 31, Ward 34 and Ward 42 in Auckland Hospital so that
heart adults - adults with CHD and adults with rheumatic heart
disease - staying on these heart wards receive the support they
need while receiving treatments. It’s not just the heart adults that
Ashley will focus on. She will also provide support to heart parents
and their teens transitioning to adult wards when they turn 15,
an important milestone when heart teens take over from parents
the responsibility and decision making about their own heart
conditions and treatments required.
become adults. This new role
underpins our commitment
to supporting heart kids
through life as we believe no
one should travel the heart
journey alone.
You will also see Ashley on
the paediatric heart ward
(Ward 23B) on Wednesdays.
Together with Katya and
Nana Marie, we have Family Support on Ward 23B six days a week.
Ashley is excited about her new role and is looking forward to
catching up with familiar faces and meeting some new ones as
well. Please join us in extending a big warm welcome back to
Ashley.
With more adults than kids now living with CHD, it’s extremely
important that we continue to support our heart kids when they
Family Support for South Auckland
We are super excited to receive funding from Lottery National
Community Grants and Foundation North for the appointment
of a Family Support Worker (FSW) for South Auckland, a
community with a disproportionately large number of families
affected by rheumatic heart disease.
Currently, we have 200+ South Auckland families registered as
members of Heart Kids but there are many more heart families
in great need out there that are not known to us. The need for
support in this area is huge as indicated in the findings of our
2013 South Auckland Special Project.
We want every heart family to walk their journey knowing
they are supported and have someone to turn to. By having a
dedicated FSW for South Auckland, we aim to build a strong
and resilient community that is able to face the challenges a
heart defect brings. Heart families are armed with knowledge
and understanding of what they will face, knowing that Heart
Kids is by their side every step of the way.
We can’t thank Lottery National Community Grants and
Foundation North enough for their recent grants that enabled
us to reach and make a difference to a community in great
need. We look forward to introducing the new Family Support
Worker to all of you.
Fontan Education Day 2016
Great news! Auckland will be the host city of Fontan
Education Day 2016, organised by the Australian and
New Zealand Fontan Registry (ANZ Fontan Registry).
Julie Neilsen, Heart Kids Branch Co-ordinator and a parent
representative on the Steering Committee of the Fontan Registry,
and her daughter Jessamy Neilsen who is a heart adult with a
Fontan circulation, attended the last Education Day held in Sydney
in October 2015. They thought it was a great event and would
highly recommend it to Kiwi Fontan participants and their families.
The event covered a lot of areas related to Fontan research and
life experiences that are of interest to those affected. Keep an
eye out for the presentations and announcement of the date for
Fontan Education Day 2016 at
www.fontanregistry.com/anzfac.aspx.
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Please also feel free to contact Julie at
julie.neilsen@heartnz.org.nz for further information about the
Fontan Education Day and Fontan Registry.
Pocket rocket Taylor Campbell Lilley
Taylor’s journey is not all about his heart. He was diagnosed
prenatally with complex birth defects and wasn’t expected to live
outside the womb but this brave young man has tremendous innate
strength and a steely determination that helped him fight for his life.
He received a surgery at just 2 hours old that corrected most of his
birth defects. He now proudly wears a zipper scar on his chest, the
result of an open heart surgery to repair the hole in his heart when
he was 14 months old. Despite the rocky start to his life, he has
taken his conditions in good stride.
Donate online at:
www.heartkids.co.nz
Taylor’s journey started well before he was born. He was an IVF
baby after 7 long years of fertility treatment. At the 12-week scan,
we were told his major organs including his heart were outside his
body and that he had 1 in 4 risk of having Down syndrome or 1 in
6 risk of Trisomy 18 or 13 (survival outside the womb is unlikely). As
you can imagine Trevor and I were extremely distraught. We were
referred to a Specialist in Wellington for further tests. Luckily, the
tests confirmed that Taylor had no chromosome issues. It was a big
relief for us.
Following the 20-week scan it was confirmed that Taylor had an
Omphalocele (sack outside his body) that contained his liver
Kids Day Out
Variety Show
The much anticipated Kids Day Out Variety Show is back
in 2016! It will take place in the months of February, March
and April in 25 different locations throughout the country.
Kids Day Out is a special time for our heart kids and
families to come together and have a bit of fun. It’s also a
great change from all the clinic appointments, tests and
scans, and medical treatments that are part and parcel of
being a heart kid.
We were extremely thankful to local businesses for
their generosity that made Kids Day Out 2015 possible.
By sponsoring tickets for local heart families to attend
this fun, energy-packed show, businesses will also be
supporting Heart Kids as additional funds raised will be
used to provide support services for the 12 babies born
every week with a congenital heart defect in New Zealand
and their families. We are looking forward to having your
support for the 2016 Variety Show. For show dates and
locations and ticket sponsorship, please visit
www.kidsdayoutvariety.co.nz.
Complimentary tickets will be available for members of
Heart Kids at local branches. Stay tuned for details!
and gut. This required a
corrective surgery on the
day his was born. We just
carried on with weekly trips from Napier to Wellington in the later
part of our pregnancy. The trip was long and tiring for us but we
knew we had an even longer journey ahead of us that we need to
embrace.
Our pocket rocket Taylor Campbell Lilley was born on 17 January
2006. Two hours later, he was off to surgery.
Unbeknown to us, Taylor also had a diaphragmatic hernia,
pericardial defect and hypoplastic left lung. Thankfully all apart
from the lung condition was repaired during his surgery.
At 5 days old Taylor was then diagnosed with Atrial Septal Defect
which is a hole in heart. We were told to wait and see as the hole
may not cause any problem or it may close on its own.
Unfortunately, Taylor failed to thrive when he was 12 months old.
He weighed only 6.4kg and his gross motor development was
lagging. Two months later, Taylor had an open heart surgery to
repair the hole in his hole. He is very lucky that once he got his
heart fixed it has been onward & upwards for him with no further
follow up or surgeries required.
Taylor is small for his age (in lowest percentile for height & weight)
but he has more energy than most kids and he does not let
anything hold him back. He participated in the 5km Kids Heart
Ride at Cycle Challenge and helped raise over $550 for Heart Kids
as a way to give something back to Heart Kids that supported us
when Taylor was little and not well. He is a zipper kid after all!
Chris Lilley, Mum
January 2016
5
Rickshaw Andy’s world record ride
Huge congratulations to our extraordinary supporter
Rickshaw Andy for completing 656 laps of the Taupo
Velodrome in 24 hours as part of his effort to set the world
record while raising funds for Heart Kids!
Rob, Kerry and Susie from Heart Kids National Support Office
travelled down to Taupo to join Andy in his epic mission. As part of
the support crew, they rode, counted laps and cheered throughout
the night to keep Andy awake and entertained. His crazy effort
helped raise over $5,000 for Heart Kids! The record ride would not
be possible without his passion and commitment which we hugely
appreciate. We are grateful to everyone who donated and came to
show their support on the day. Our thanks also go to MoreFM for
their support throughout the challenge and to legendary cyclist Colin
Anderson for his expertise and company which was invaluable.
With the record ride done and dusted, Rickshaw Andy is already
working on another crazy idea that he will carry out in 2016, again to
raise some serious funds in support of Heart Kids. Watch this space!
A fantastic Cycle Challenge
We were blown away by the
incredible support from our
cyclists, fundraisers, supporters,
donors, Taupo locals and the
amazing Cycle Challenge team for
the successful and fun weekend
we had in Taupo.
This year, 35 heart kids and their siblings
formed part of the 101 entrants in the 5km
Kids Heart Ride. It was wonderful for us
to have the lovely team from Jetts Fitness
Taupo taking our heart riders through a
warm up. Our riders were in high spirits and
had heaps of fun at the Heart Kids Club
House despite the threatening weather.
We had face painting and tug of war and a
band playing.
At one stage the singer and guitarist came
down from the stage to play and dance
with the kids which was awesome! A huge
thank you to our corporate partner Visa
for supplying the hospitality tent, food and
beverages, masseuse, and face painting
on the day, and also to Pak’n Save Taupo
for donating 10 bikes as spot prizes for
entrants of the 5km Kids Heart Ride. Thank
you everyone for making it such a great
event.
See you all again at the Cycle Challenge
40th Anniversary in 2016!
6 heartline
Donate online at:
www.heartkids.co.nz
Heart Stopper Challenge
What a great 2015 series of Heart Stopper events! We were absolutely blown
away by the fantastic support received for the seven events across the country.
We also had a very special Heart Stopper
plunge organised by a team from The
Warehouse in November. We are hugely
grateful to The Warehouse Support Office
team especially Mele and Stephen, mum
and dad of our Born Fighter Jeannette,
for organising this special Heart Stopper
and raising essential funds to support our
heart kids and families in local communities
across the country.
Team Warehouse
Heart Stopper
We can’t wait to bring you another exciting
season of Heart Stoppers - kicking off in
March 2016. Planning is underway and we
will have more updates on our website and
Facebook page when dates and venues
are confirmed. Stay tuned and don’t forget
to like our page at https://www.facebook.
com/heartstopperchallenge/
Cloud Base Nine puts
people before profits
Jetts Treadathon
Heart Kids has been blown away by the outpouring of love, support and generosity from
everyone who participated in the Jetts Treadathon in October. The 12-hour nationwide
challenge raised a staggering $85,000 for Heart Kids. We are hugely grateful to Jetts and
all its participating gyms, everyone who jumped on the treadmill, everyone who donated
and every business that donated gifts for raffles at the local gyms. You are all rockstars!
This awesome Kiwi outdoor clothing
company is giving away a whopping
80% of its profits to its charity partners
and Heart Kids is pleased to be
one of them. The company is now
crowdfunding to bring to the market
its amazing line of shoes, clothes and
accessories created by designers
from leading clothing brands around
the world. You can pre-order them
by buying a voucher from as little as
USD15 to spend on a product on its
website. You can go up to USD220 to
design your own shoes or USD7,000
for a 10-day extreme sport adventure
in NZ.
With every sale you get amazing
clothing and experience, and by
choosing Heart Kids as the charity
to receive the 80% of profits from
your purchase, you empower Heart
Kids to continue providing vital
support to Kiwi kids and families
affected by congenital heart defects.
Support Heart Kids by supporting this
incredible company. Pre-order at
www.indiegogo.com/projects/theworlds-first-philanthropic-clothingcompany#/
Heart Kids CEO Rob Lutter and heart adult
Jessamy Neilsen thanking the Jetts team at
their annual award night.
Check out the entire range at
www.cloudbasenine.com
January 2016
7
‘Tis the season to be jolly…
A heartfelt thank you
And our heart kids and families celebrated the silly season at end of year party organised
by their local branches. Check out these lovely Christmas party photos from Heart Kids
Auckland, Heart Kids Canterbury, Heart Kids South Canterbury and Heart Kids Waikato.
Heart Kids
Waikato
Heart Kids
Auckland
In the months of October and
November alone, we have received
grants from 12 trusts and foundations,
kudos to Emma Burton, Grants and
Community Fundraising Manager for
the great success.
A huge thank you to these grant-giving
bodies including ANZ Foundation,
Angels for Children Trust, Endeavour
Community Foundation, Foundation
North, Lion Foundation Central
Regional Committee, Lion Foundation
Southern Regional Committee,
Lottery National Community Grants,
Mt Wellington Foundation, NZ Post
Community Post, North and South
Trust and Pelorus Trust. Grants from
trusts and foundations provide a vital
source of funds for our organisation
as we are not government funded and
we rely solely on voluntary donations
to fund all our services. Thanks to
Trillian Trust for funding this edition of
Heartline!
Heart Kids
South Canterbury
Their financial assistance helps us
tremendously to deliver vital support
to our heart kids and families.
Heart Kids
Canterbury
Thank You!
Yes, I want to make a donation to Heart Kids NZ
Complete and post this form to Heart Kids NZ, PO Box 108 034, Symonds Street, Auckland 1150.
For further information on donating, please email: giving@heartnz.org.nz or call 0800 543 943.
Jan 2016
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Donations can also be made directly to the Heart Kids NZ bank account ASB #12-3209-0368133-00
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