Document 55703

Editor’s note
Dear CF Community,
As I am writing this note, I can’t believe that it
is August and soon it will be Christmas time
again! There has been a lot happening in the
KZN CFA over the last couple of months, we
had our Annual General Meeting earlier in the
year where we elected new committee
members (please see below committee
members for your information). We have had
Jeans for Genes Day on 29 June 2007 and
unfortunately because of the strike happening
across the province, a great number of schools
were closed down completely on this date.
Even though we had these challenges, we still
managed to raise funds through this project
and hope to approach schools earlier next
year to make it even more successful. Thanks
for everyone who made a effort to make this
happen. We have our Licence to Cure Charity
Ball coming up in October 2007 and we are
really looking forward to raising the awareness
of Cystic Fibrosis and raising as much funds
as possible for the Association.
Remember that all letters, news,
achievements or any contribution can be sent
to Marie Allan, P.O. Box 51138, Musgrave,
4062 or the editor at [email protected]
Reach for a Dream … pg 4
Jeans for Genes 2
Take care,
Marie Allan
Mark Long – Chairman
Debbie Long – Vice Chairlady
Bill Allan - Treasurer
Carol Bryant – PR Officer (CF)
Eunice Botha – Committee Member
Cyrese Hoffman – Committee Member
Marie Allan – Secretary
Grant Desmond – Committee Member (CF)
Glynis Desmond – Committee Member
Jacques Botha – Committee Member
Upcoming Charity 5
Carol and Marie will be attending a SACFA meeting on 15/16th September – we will give you an update in
the next newsletter.
29 JUNE 2007
Carol Bryant did a CF Talk at HCA
Thank you Carol – you are a star!
Children at Hillcrest Christian
Academy in their Jeans
“Jeans for Genes Day” was earmarked for 29
June 2007 and 350 letters were sent out to schools
in KZN to ask them to take part in our project. Our
sincerest thanks to Mum’s Mail who sent out the
letters on our behalf, it saved us a huge amount of
money in terms of postage fees and time.
Unfortunately due to the strikes imposed by the
Department of Education, most schools were
closed on the 29th June 2007 and this impacted
greatly on our Jeans for Genes Day. We are
working with the Cape Town CF Association for a
“Genes Day” for 2008, so watch this space early
next year!
We would like to express our gratitude to Hillcrest
Christian Academy, who donated R4212 towards
our project. The children raised R2212 and the
school matched it by donating a further R2000 to
our worthy cause. Thank you so much HCA and a
special thanks to Principal Temlett!
Lydia, Cindy and Doctor Egner also offered their
support by getting St Augustines Hospital involved
in our project. Posters were stuck up around the
hospital and staff had to pay R5 to wear their jeans.
Thank you so much for your phenomenal effort and
for always supporting the Association with our
fundraising initiatives. The “team” raised a
phenomenal R1223,21! Thank you so much!
The full amount raised for Jeans for Genes Day is
R10 038!
Thank you to everyone involved in making this day
Cindy, Doctor Jonathan Egner and Lydia who
got all the staff at St Augustine’s Hospital
involved in our project – THANK YOU guys!
A little girl named Celine Foxcroft
Celine Foxcroft is 10 years old. She is a bubbly, friendly little girl filled
with a lot of dreams…her biggest dream is to meet Celine Dion.
Tell us a bit more about yourself …
What is your favourite song / music?
I like Hip Hop music and love songs.
What makes you laugh?
My mom’s cousin, Glen, he is really funny.
Is there anyone specifically that you aspire to?
Celine Deon.
What is your favourite food?
I like eating healthy food like vegetables … and I love chocolates.
What is your favourite movie?
Did you have a favourite sport at school / now?
I play netball.
“Everyone always
wishes that they were
different but when you
are different, it is not
that nice”.
Tell us a bit more about living with CF …
At what age were you diagnosed with CF?
At 3 months old.
What is it like having CF and going to school?
It is sometimes embarrassing. CF is not common and not many people know about it. Sometimes I
am off school for a couple of days or weeks at a time and the children ask a lot of questions. They ask
me things like “what is that” (referring to her portocath). Sometimes I feel like everyone is normal but
I am not. I don’t know anyone else with CF and sometimes it would be nice to know someone who
What do you find the most difficult about living with CF?
Everyone always wishes they were different but when you are different it is not that nice. I hate
physio and the lack of energy on some days. I really don’t like going into theatre!
How do you keep yourself busy when you are admitted for IV’s?
I keep re-arranging my room in the Paeds ward and watch TV.
What works well for you to keep your weight up?
Junk Food, Chocolates and Nando’s!
Do you exercise as part of your physiotherapy? Do you have any tips for young kids living
with CF or pre-teens going into that period of their lives to make physio more practical?
Be as active as you can! Make it fun, for example, play a game like doctor-doctor, hopscotch or have a
singing competition – that is great exercise for your lungs!
What has living with CF taught you personally?
I have learnt to be strong and to trust my instincts. I have become more calm, I don’t get too
hysterical anymore about scary things, like going to hospital. I feel sorry for people who are in a worse
position than I am, I feel for what they are going through. I have learnt to be grateful for what I have,
if I see small babies going for operations, I feel really sorry for them.
How does your sister feel about you having CF? (This was a very difficult question for
Celine to answer so she redirected the question to my older daughter, Jessica who was
visiting Celine with me in hospital, she is 10 and does not have CF)
I feel sorry for her because she has to take so much medicine all the time. Sometimes I feel jealous
because she gets so much attention. I also feel jealous that I can’t eat so much junk food!
Three years ago we applied to Reach for a Dream for Christy
to visit a village called “Give Kids the World” in Orlando,
U.S.A. We were accepted on the condition we pay for all air
tickets to the States. Christy’s dream finally came true in
March this year. We set off as a family to Orlando, Florida.
“Give Kids the World” is a village where children who are
battling with life threatening illnesses and their families are
invited to stay. It is run by over 3000 volunteers and is the
most awesome and humbling place to stay. We were treated
superbly and enjoyed every minute of our 7 day, 7 night stay.
There were children from all over the world staying there
(over 91 families can be accommodated at a time).
Once we arrived we were given passes to visit Disney
World, Sea World, Epcot Centre, MGM Studios, Universal
Studios and the animal Kingdom. WOW! So much to do in
just 7 days! We were busy every day from morning till night
and I must say for this one week it was great for our family to
swop hospitals, treatments and medicines for that one
special treatment of a wish fulfilled. We forgot about CF for
a while and just enjoyed having lots and lots of fun together.
Give Kids the World partners with over 300 wish-granting
organisations around the world. We were fortunate enough
to be accepted to go there. To visit website go to
Highlights of our trip were :
• Seeing the Barney show at Universal Studios
• Meeting Mickey and Minnie Mouse and having our photo’s
taken with them
• Going on the African Safari and seeing the Lion King Show
at the Animal Kingdom
• Seeing the magical Disney Parade at the Magic Kingdom
• Having ice cream every day from the ice cream parlour at
Give Kids the World
• Getting hugs from Mayor Clayton and Miss Mary (his wife)
(the mayor of Give Kids the World)
But most of all this trip was about creating memories that will
last forever.
If anyone is interested in visiting Give Kids the World, they
must be able to pay for all their own tickets, visa’s, airport
taxes and any extras to and from the U.S.A. Should you be
interested, you should contact Reach for a Dream
Written by Debbie Long
2-007 Licence to Cure Charity
On 27 October 2007 the KZN Cystic Fibrosis
Association will be hosting a dinner dance charity
ball in aid of Cystic Fibrosis. The ball will be held
at the Hilton Hotel and is themed “James Bond
2-007 Licence to Cure – give or let die”. The
UK CF Trust held a similar ball in March of this
year with great success and they raised a huge
amount of money for the Trust. Thanks to Sandra
Howart from the CF UK Trust for all the
information and ideas for the ball. Vanessa
Davies, who has a CF sibling in Gauteng, redesigned the invitation for the KZN CF
Association (on the lefthandside of this page) and
it looks fantastic. Thank you Vanessa!
“Secret Agents” from Corporate companies are
invited to attend the ball to give some of their
money / pennies for our cause - an auction, raffle
and “pledges” are held throughout the evening to
raise funds for the Association. Debbie Long and
Marie Allan are on the organising team for the
The organising team has approached several
businesses/shops/service providers to donate
prizes to auction off or to give away as lucky draw
prizes on the night and would appreciate any
additional auction prizes / raffle items if anyone in
the CF Community has the means to obtain such
items. Tickets cost R5500 per table of 10 guests.
Should you want to contribute or have any
questions, please phone Marie Allan on (031) 202
1644 or on 082 303 6224 OR contact Debbie
Long on (031) 768 1687 or 083 643 3328.
There will be some feedback in our next
newsletter to let you know how it went.
Congratulations to Paul
Dolman (CF) from Jhb
who successfully
completed the Comrades
in June 2007! Well Done
Some natural medicine…
Source – Natural Medicine
You may have seen this article in a local
newspaper earlier this year about Rida
Viljoen (JHB), who was diagnosed with CF at
birth. I thought I’d put it in the newsletter
for those who missed it! Rida never thought
that she would be able to fall pregnant – but
she was expecting twins at the time the
above article went to print – WOW!
According to the article, doctors at the
hospital began researching similar incidents
worldwide to find out how other doctors had
treated it. Their research failed to find
another example of a natural occurring twin
pregnancy in someone with CF, making
Rida’s pregnancy even more special. Her
twins were delivered on 16 June 2007, a little
boy named Martie and a lovely little girl
named Larice. I chatted to Rida on the
phone and both her and her twins are doing
really well. What an inspiration to all CF
families! We wish Rida all the best with her
little ones. For more pics of her and more
stories on CF in Gauteng area, visit
Source - Caxton group of newspapers
World first for CF mom-to-be!
We asked Professor Andy Bush (UK)
which additional vitamins CF’s take in the
UK. This was his answer…
• Vitamins A & D – double dose
• Extra Vitamin K
• It is also important to do some
weight bearing exercise to prevent or
minimise bone disease
Celine Dion coming to S.A.!
20 February 2008
This is for all the CF Kiddies – we are trying to organise with the promoter
of “Celine Dion Events” taking place in 2008 for kids in the KZN region to
meet with Celine Dion prior to / after her concert. Please can all of you ask
your mom or dad to let us know whether you would like to meet her. We
need to let the promoter know how many children would like to meet Celine,
so they can see if they can help us.
Please contact Marie @ [email protected] or 082 303 6224 (you can just
sms, that would be fine) – by latest mid October 2007. Please note if you
don’t get back to us, we will only be able to accommodate those kids who
have confirmed - so make sure you confirm a.s.a.p.!
Ask your teacher if you can stick this up in your bathroom in school – that will teach all
the kids to wash their hands and get rid of some of those nasty germs!
You are the GERMinator…search for germs on this picture…
me feel
a bit