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 Day..pg 2 Take care, Marie Allan NEW KZN CF ASSOCIATION COMMITTEE MEMBERS 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 Event..pg 5 Carol and Marie will be attending a SACFA meeting on 15/16th September – we will give you an update in the next newsletter. 4 JEANS FOR GENES DAY 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 happen. 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? ne Celi 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? Bratz. 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 understands. 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 :www.gktw.org 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 Ball 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 event. 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 Paul! 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! http://www.freewebs.com/496cfonline 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… Germs make me feel a bit sick!