It is next week, can you believe it???

Today we had a meeting with Ben's school to finalise the morning we leave proceedings. The captains announced "Poo Ain't Taboo" in today's assembly, Ben didn't want to speak so he just stood up next to the Captains.

The SRC are going to start collecting money from tomorrow.

We are recycling the posters from the weekend and sending them to all the 3 kids schools to put them up. One was already up when we arrived there this morning.

It is all starting to come together, and it is next week we leave. No time to be scared.

"Bite off more than you can chew, then chew it."

Thank you!!!!

Yesterday (29/3/09) was the big soccer fundraiser day with Revesby Workers and Panania RSL soccer clubs and to all involved we would like to say THANK YOU!!!!!!!!!

It was a LONG day but worth it.

Ben decided after watching his team play that he was going to join them agian and dragged Matt into club house to sign him up. This made us very happy, now we just have to add his soccer into the weekly routine!!! Ahhhh......

In total between the two clubs we raised over $1800, this was mainly with the tins being walked around and a couple of generous donations.

This is Ben with Nikki Hanna & Bob Bell after receiving his cheque.

The cheque made his day, and will be putting it up on his wall next to all the wrestling posters.

With all the fundraising aside, Yesterday was more about remembering Neil and all he did for soccer and especially girls soccer. This annual memorial game is held in his honor and with the help of Matt & Roughie will go on for many many years. Ben actually played with the youngest Hanna daughter for a few years before she switched over to the girls comp.

We are now actually over the $8000 mark so I will increase the goal again, how terrific is that???? Ben is so happy and grateful.

Thanks Roughie, Bob and a extra special thank you to Claire & Elaina, couldn't have done it with out your help.

Oh yeh, Panania won the main game.... you should know by now not to ask me the score, I had to ask the kids who won!!! Oh and a last thank you to the Panania guys who helped me out with a cool refreshment when I finally made it to Kelso.

Increased the target

Thanks to all the support we have had so far we have had to up the target!!!!

It is now $8000+

With the efforts of our sporting clubs we have reached the original $5000.

$10,000 would be FANTASTIC if we could reach it..........

"Hope is like a bird that senses the dawn

and carefully starts to sing while it is still dark."

Katelyn and Regional swimming

Just to let you know Katelyn attended the regional swimming carnival yesterday, with the thanks to her brothers.

Matt & I were unable to get out of work due to time off for Walk. Brett & Ben escorted her there. The train ride went a bit astray, my fault I didn't specify which Homebush train station. So an hour late but in enough time the trio made it to Sydney Olympic park.

She swam well, only one heat in her event 1oom butterfly, she came 10th. But the best thing of all she now has a jumper to prove she made it to regional's so she is happy.

"What counts is not necessarily the size of the dog in the fight

- it's the size of the fight in the dog."

Thank you, Canterbury Hurlstone Park RSL Youth Dance Club.

By Jo,

Katelyn's dance club put on a BBQ day on Saturday 21st March. All profit from this and the canteen where kindly donated to Ben's cause.

The grand total of this day was $487, very generous of all those who brought breakfast or lunch that day from dancing. To all the club members we say thank you.

"A person's true wealth is the good he or she does in the world."

Thank You, Ashfield Swim Club.

By Jo,

A Huge Thank you must go to Ashfield Amateur Swimming Club for their support of "Poo Ain't Taboo"!!!

On Saturday they put the taking of the weekly raffle towards Ben" walk. A total of $225. A great effort for all club members.

Below is Ben's speech he said on the day:

Firstly, let me say how much I love Ashfield Swim Club.
I never have trouble getting out of bed early on a Saturday morning to come and swim with you all here.

I was diagnosed with Crohn’s disease in May 2008 after being sick for 8 months. So I am trying to raise awareness for Crohn’s and other inflammatory Bowel Diseases and to raise vital money for the Sydney Children’s Hospital Randwick so the IBD team can continue their research into a cure.

So in less then 3 weeks from now, with the support of my family I am going to hike from Newcastle to Sydney.

My family and I are very grateful for the generosity of the executive committee to donate the takings from today’s raffle to my cause, it is very much appreciated. So to all of them I say thank you!

And to all of you, my fellow swim club members I would like to say thank you to you all for your support.

I have handouts here if you would like one on how you too, can be part of “Poo Ain’t Taboo”.

Thanks

"When it comes to giving, some people stop at nothing."

Theme song..........

You’ll Never Walk Alone


When you walk through a storm
Hold your head up high
And don’t be afraid of the dark
At the end of the storm
There’s a golden sky
And the sweet silver song of a lark
Walk on through the wind
Walk on through the rain
Though your dreams be tossed and blown
Walk on, Walk on
With hope in your heart
And you’ll never walk alone
You’ll never walk alone
Walk on, Walk on
With hope in your heart
And you’ll never walk alone
You’ll Ne-ver walk alone.

I do apologise to Matt, he is not happy with it, as it is the Liverpool anthem. Every time my phone rings and he hears this tune he cringes!!!! Martyn was kind enough to forward me some u tube footage of the Liverpool fans singing, Yes he loves Liverpool.

25 days to go.......

Training has picked up a bit, it would want too with 25 days to go............... but I don't have enough hours in a day!!!!

With the help of Claire & David we have our equipment for the walk covered. Only have to organise shoes for the 2 boys.

Brought Ben a day pack yesterday and I have loaded it up and now use that to walk with as practice. It is amazing how many people carry packs while walking, so I don't look like a dill.

The articles in the local papers have raised interest which is great, it meant they worked!!!

The next 25 days are going to be BIG!!!

Next weekend the Ashfield swim club where we spend our early Staurday mornings are generously giving their raffle money to Ben's cause.

Canterbury Hurlstone Park RSL Youth Dance club are holding a big BBQ day and with the monies raised from the BBQ and canteen the profit will go to Ben's cause.

The 28th & 29th March is the Panania RSL Soccer Club v's Revesby Workers Football Club Trial weekend. The main Game is the over 35's Neil Hanna Memorial Match. This whole weekend is now the "Poo Ain't Taboo" weekend. Both clubs are organising many fundraising activities to promote awareness of Crohn's and to raise money. This is a great weekend to watch some football so come on down to Kelso & Marco reserves at Panaina that weekend. details of the big match will be posted closer to the date.

Harcourt Public School where our 3 kids went will be involved in some way, either a mufti day or something like that and the Captains may come to launch and walk Ben to Station.

It is all coming together!!

Thank you to all our clubs & schools for all of your generous support!!!!

"If your ship doesn't come in, swim out to it."

Come and be part of our journey

Please come and be part of our journey by walking with us or dropping in to see us to say G’day at one of the below mentioned locations.

Walk from 1-15 days; just ask for an itinerary to be emailed for your perusal.
Attend the breakfast launch. Thursday 9th April 7.30-9.00am at Canterbury Boys High School, followed by short walk to Canterbury Railway station to send Ben and his team on their way. This launch will also have the Mayor of Canterbury & the Canterbury-Bankstown Express Newspaper in attendance.
Tuesday 14 April, BBQ Dinner & or sleep over at the Basin Campsite.
Wednesday 15th April, Yarramalong store, Morning tea
Friday 17th April, Somersby store, Morning tea
Sunday 19th April at Brooklyn pub around midday. Ben and his team will arrive by ferry from Patonga and plan to catch up with family, friends & supporters here for a few hours.
Monday 20th April Cowan Store, lunch time
The Finish Line Thursday 23rd April 6pm at Home, BBQ dinner (byo grog).
RSVP for any of the above by 3rd April 2009.

If you wish to show your support in way of sponsorship/donation this can be done in 3 ways:

By credit card at www.everydayhero.com.au/ben_power
Cash with your details to us for receipt to be processed by foundation at completion of walk.
Cheque, made payable “Sydney Children’s Hospital Foundation” to us for receipt to be processed by foundation at completion of walk.

For those of you that have already made a donation we say thanks!


Ben and his team would love for you too, to be part of this challenging journey.

"To accomplish great things,

we must not only act, but also dream;

not only plan, but also believe."

Support

As a friend/mother you try and support those around you. You listen and try and put your self in their shoes too see what it would be like. But until you are face to face with IBD you have no real idea. I still don’t fully understand but I do have a better understanding.

The medications people take have side affects and these are not talked about over coffee or dinner, so they are not taken into consideration when someone is a little moody or overweight. When People with IBD are in remission, it is sometime forgotten that they still have a life long condition which still affects their daily lives.

I know with Ben he won’t go anywhere unless he knows where a toilet is located. Hence the toilet location finder on the link bars.

Also the link for the IBD support forum is a life saver for sufferers, and family, it is a great branch of support & knowledge. Having people to talk to that understand is comforting.

Life does go on but first there is a hell of a lot of hurdles to jump.....or actually medication to swallow.

"Be the change you want to see in the world"

Second article

http://www.torchpublishing.com.au/read/index_assets/torch_11_03-09/Canterbury_Page_009.jpg



A couple of errors. It is actually Inflamortory Bowel Disease that should have been mentioned.

First newspaper article

http://express.whereilive.com.au/news/story/grand-poobah-walks-his-way-to-a-cure/

Map of Walk

Remebering we will only be walking from Teralba to Thornleigh.

Life with IBD, by Kim

My name is Kim and I have been living with the Inflammatory Bowel Disease, Ulcerative Colitis for about 7 years. It started as a minor inflammation which was controlled by drugs for a few years until after a stressful period in my life when it got worse and become full blown Ulcerative Colitis. They say that stress isn’t a factor in IBD but for me that seems to be the trigger that starts it all off.

The impact was substantial. I suddenly had my life turned around due to a disease which no one knows how it starts, what causes it and there is no known cure. I suddenly had to make sure that I knew where a toilet was if I went out anywhere because I never knew when an attack would occur. At the start it wasn’t too bad, but the more stressed I got the worse the symptoms became. The worse the symptoms got, the more stressed I got and it became a vicious cycle. Even when I tried not to get stressed it didn’t seem to matter. I was tired and fatigued all the time and some days it took me all my time to get out of bed and go to work.

I went through days of feeling bloated then the diarrhoea would surface and it became a cycle which impacted all aspects of my life. I was tired all the time from the blood loss and my specialist who is fantastic, tried a variety of drugs to keep it under control. This included various doses of Prednisone, which in itself works well but the side effects aren’t great. The development of the classic “moonface” and weight gain from the drugs depressed me and even though everyone said not to worry, I still did.

Friends and family try to understand but unless you have lived with this disease you can’t explain what it is like to not feel well every day and to have your life changed completely from being reasonably healthy one minute to being unwell and overweight from the drugs you are taking. I am very lucky to have a supportive group of friends but even they sometimes don’t understand why you can’t go to a restaurant for dinner because certain foods make the condition worse or you aren’t feeling well. I can usually manage to find something on a menu but at its worst bland, plain food was the only food for me.

I am a teacher so there isn’t always the opportunity to go to the toilet when needed. At one stage I had to leave work at lunchtime because I had an accident that came with such severity and quickness that I didn’t make it to the toilet in time. This was extremely embarrassing and made me depressed at having to admit to such a childish thing. This was the start of a period when I didn’t know when I would suffer an attack and was taking each day one at a time. At this time the inflammation was gradually getting worse and my specialist was prescribing Prednisone regularly to keep the inflammation under control.

My condition got dramatically worse and I had to leave work and ended up spending 3 and ½ weeks in hospital where the final solution was a blood transfusion and an infusion of a newly available drug called Infliximab. It was either that or bowel surgery which was a definite possibly if the infusion of Infliximab didn’t work. Thankfully for me the infusion worked but it also meant a recuperation period at home with no stress and relaxation. That meant no work, missing out on a planned Pacific Island cruise with friends because I had only been out of hospital for a couple of months and was still being monitored closely.

I have had a couple of flareups since that time but they have been managed again by drugs. But even though I have been well there is always the thought in the back of your mind that if you let yourself get into a bad state again that the next time might be the time that the doctors say that the only solution is to have surgery. At the moment I am on a daily routine of drugs, one which is an immuno–suppressant which suppresses your immune system and makes you more susceptible to infection. So I have to be careful when the flu season hits as it takes me longer to get over any kind of infection.

Having an IBD has significantly changed my life as I have to consider every decision I make about holidays, working and lifestyle because whenever these things come up you have to make sure that you have all bases covered with regard to your health. I have only just got back to a reasonable number of days at work but this could always change if my condition doesn’t improve or it gets worse in the coming months. I need to make the right decision for myself and if I have a choice between working and having to have bowel surgery then I know I will give up work as my health is the most important thing to me.

I am thankful that I have a great specialist who looks out for me and makes sure that I am getting the best treatment possible. It is possible to live well with an IBD as long as you have a good attitude, a good specialist and a supportive network of family and friends.

Clinic Check up

By Jo

On Tuesday Ben had a clinic check up, it had been 8 weeks since his last one. Dr Avi was very happy with his progress and basically said keep it up and see you in 3 months!!!! Yipee.....

Avi did stress though that he doesn't want Ben training. He is happy for him to walk as he knows we can get Ben out at any time.

Ben had gained 1 kilo and grew about 6mm, slow and steady one the race in the height department. Look at me I am very patient in waiting to grow taller.....

"The best and most beautiful things

in this world cannot be seen or even heard,

but must be felt with the heart."

5 weeks and counting!!!

By Jo

Gee, now time is going to get away from me.......At the 6 week mark I was going to get serious about training, but NO!!! other things get in the way, things way more important. But I have booked a bay walk with a girlfriend for Saturday morning. I have no choice now. It is getting to close to say "she'll Be right!"

This week saw us do some photo shoots for the local papers, poor photographer, didn't know what to say with Ben, Brett and Me started mucking around. Then the boys decided to have a grass fight.....we got through it in the end. These photos I quickly took just to show off our shirts.

These shirts where generously donated by Jo Rixon of

Steve Rixon Sporting Enterprises Pty. Limited

(02) 9585 1444

(02) 9585 1201 (fax)

0414 338 382

Jo has been suppling our soccer wardrobe for many years as with all our work shirts. We wouldn't go anywhere else!!!!

"A smile is a curve that sets everything straight"

Zone

By Jo,

Yesterday was spent at Bexley pool, with both Ben & Katelyn attending the zone swimming carnival.

Both swam great times. Ben's birthday is in such a

bad time of the year for school carnivals. Half the boys have already turned 14 or

nearly and he has to wait till December. One boy in his age group broke a few records! Ben looked great in the water and even got a few PB's.

Ben will attend again on Friday for the second half of the carnival. Katelyn will be at camp as she leaves tomorrow morning. She has decided though if she can come home early she will. She has made it to Regional for butterfly, only thing is at regional there are no 50m races except for Freestyle. So she will have to swim 100m which is fine she will start training next week.

Katelyn has a thing for being a sticky beek!! ask anyone who has seen her swim. Last thing we said was "look straight ahead not around the pool" on completion of her race we asked "why did you look around?" reply "I didn't!!"

"well why did you look at the camera!!!!!"

"OOPS!!!!" was all she could say.........

"The best and most beautiful things

in this world cannot be seen or even heard,

but must be felt with the heart."