Surf and School

A seven week stint at home, the longest in almost two years has allowed me to sort out an enrolment in school for Ed at Arranounbai Special school with school transport, a 2 week familyholiday in Shoal Bay at the end of September, a weekend of respite in Bear Cottage whilst I headed south across the border to Melbourne, some access to other community service program’s to assist us in caring for Ed at home and begin the enrolment process into University to study Psychology- that’s for me not him.

But like all good things, it came to an end last Thursday with another line infection, this time in both lines and one line has grown two infections. And so after almost 20 months of having a line inserted into his chest, countless admissions to hospital for IV antibiotics due to infection, thousands of temperature checks the last infection has landed us back here at Club WestMed and finally a decision to have it removed which is happening as I type.

The upside is he’ll be able to resume his surfing career or even just begin by being able to access the hydrotherapy pool at his school on a weekly basis with his classmates. The down side is we’re back to needles for his weekly blood tests and canulas in his arm or foot during hospital admissions. Since the line is so septic it’s not possible to remove and replace the line in the same procedure as he needs sometime to clear the infection from his body but we’re going to try and hold off for a while, even try and get through Christmas without anything and then think about either replacing it or inserting a Port under the skin on his chest depending in what procedures and drugs requirements he’ll need in the next little while. It will be great to hopefully enjoy the Christmas break without worrying about infections, temperatures, turning septic quickly although having said that I’m sure our little guy will find some other way to be rare and unique.

It’s planned he’ll be only in a few more days on antibiotics and then home by the end of the week in in time for school and next week’s swimming lessons- that’s my plan, hope it’s his too.

Here are the final pics with his line in.

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Sent from my iPad

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FAMILY FUN DAY ROUND UP

I have finally tied up all of the loose ends of such a special day and can provide a long overdue up date now that the silent auction prizes accounted for, returned cake tins, washing baskets, lost bags, thank-you’s sent and above all recovered from the enormous overwhelming feeling the day inspired in me.

 

For those of you that saw Ed on the day you may have noticed our little guy quite affected by the heat which was a stark reminder of the slow but inevitable decline caused by NPC, obviously very difficult to watch as a parent. I am pleased to report that he has turned a bit of a corner for the better and seems to be really benefitting from the couple of hours each morning of stimulation at either school, family day care or time with the lovely Jannine at play group. He’s actually in really good spirits this week and looking forward to his “big boy holiday” at Bear Cottage this weekend whilst I make a solo voyage to Melbourne for a mini break- but more on that later.

 

I am very amazed and excited to announce that the total amount raised for the day is just under $13 000. The day would not have happened if it was not for the hard work of Sadie Davis, Angela Jackson, Nicole O’Donnell and Julie Meynell so thank-you very much lovely ladies for your care, hard work, love and support.

 

To follow is an approximate breakdown of the stalls along with the names of those amazing people who made each of these stalls the success they were:

 

Jumping Castle:                                 $875

The Edmunds Family; The Longstaff Family; The Ryerson Family

Lemonade Stall and Lucky Dip:       $250

The Edmunds Family

 

BBQ:                                                   $875

The McKenzie Family; The Hamilton/Glinsky Family; The Pavely Family; The Hewson Family; Ralph O’Donnell for the loan of the BBQ

 

Cake Stall:                                          $985

Julie Meynell and Angela Jackson

 

 

Book Stall:                                          $880

Nicole O’Donnell and Sadie Davis

 

Toy Stall:                                            $824

Amanda Keirsey and Paula Walls

 

Silent Auction:                                   $4100

Stephanie Malone

 

Chocolate Guessing Competition & Verve Raffle:

Chocolates donated by Vanessa Hill

Verve Champagne and Gorge Jensen cooler donated by Jo Glinsky and ??

 

Chocolate and champagne raffles and gate Entry Donation: $4200

 

A massive thanks to Val Murray and Brian Hamer from Balgowlah Bowling Club for donating such a great venue.

 

I would also like to thank the following people for their generous silent Auction donations:

 

Amanda Kiersey- Manly Pantry Voucher

Amie Rochester & Brian Boyle: Tyrrel’s Wine box, Coffee Machine and Pods

Angela Osbon- Wiltshire BBQ

Bell Leisure- Sam Bell 2 x Mini Blue Sports and Movement Program for Pre Schoolers

Rhythm Factory -Bonita Lloyd- Rhythm Factory School Holiday Program

Brendon Atkinson- Basketball personally signed by LeBron James

Hoyts Movie Voucher x 3: Catherine and Aiden Machon

Catherine Robertson- Reiki Sessions with Catherine Robertson

Colleen Chisholm- 2 x handmade children’s quilts

Debbie McInnes- a selection of holiday reading books

Evergreen Music Ben Marshall- 5 x 30 minute private music lessons

Jacqui Manning- Life Coaching Session

Jannine Marsden- Babysitting by Jannine Marsden

Jenny Massingham Kindermusik- 1 Terms Fees

Jo Glinsky- Alfresco Emporium Homewares, Collaroy Voucher

Katie Brown Yoga Babes- Books, DVD’s and yoga classes

Kimberly and Lucinda Logstaff- Handmade Chocolate Hamper

Margaret Malone: Stylz Hair Voucher; 1 case of red wine; 1 case of white wine

Margaret Rochester: Handmade Crochet Rugs

Mario at Pro Design Builders- 2 sugar free, dairy free chocolate hampers

Nick Simmonds/ Ice Breaker Gym Gear: $150 voucher

Nick Whalan: Penfolds St Henri Shiraz 2006

Nicola Molloy- Babysitting by Nicola Molloy- Steph Malone’s friend- 4hrs

Peter Thomson & FDC: 3 bottles of wine

Peita Daly: Shirvington Interior Design- 5 hours of Interior Design Consult

Phyllis Richards: Manicure and Pedicure Voucher

Will’s and Pavely Families: Balloons Aloft Hunter Valley Gift Voucher

Yvonne Hollis: Channel No 5 Parfume

Wendy Lankford: Handmade Pearl Bracelet and Necklace

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Cure4Ed Family Fun Day Final Countdown

With juts 2 more big sleeps to go the Family Fun Day is certainly coming together for what looks like to be an amazing fun filled day.

Books and toys donated, recipes co-ordinated for cakes, Tombola Jars in, jumping castle booked and the silent auction list just about finalised.

We’ve had some good press from the Manly Daily last Saturday (in case you missed it)

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A follow up online from the Daily Telegraph

http://www.dailytelegraph.com.au/newslocal/northern-beaches/community-supports-manly-vale-boy-ed-sharp-who-has-two-rare-diseases/story-fngr8hax-1227094030004

 

A lovely message from the mayor of Manly which also appeared in the Manly Daily

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and then an article in the Daily Mail:

http://www.dailymail.co.uk/news/article-2799700/meet-brave-four-year-old-battling-rare-deadly-disease-known-childhood-alzheimer-s-leukaemia-s-defying-doctors-said-wouldn-t-live-past-18-months.html

 

All thats left is to make sure you’re days free this Sunday 26th of October and you can come along to Balgowlah Bowling Club.

 

Looking forward to seeing those that can on Sunday.

 

If you can’t make it along but would like to make a donation you can do so by visiting:

http://www.trybooking.com/Booking/BookingEventSummary.aspx?eid=104935

Cure4Ed Family Fun Day- 26th October, Balgowlah Bowling Club

With just under 2 weeks away, preparations are in full swing for what looks like to be a super fun filled day out so put it in your diary to make sure you can come along.

DONATIONS

The SILENT AUCTION is looking very impressive but its not too late if you would like to donate a service, gift voucher, bottle of wine, old Christmas present, anything you think worthwhile, but please pledge your donation in the next few days as time is running out.

If you would like to bake a CAKE for this stall please bring along before 11:00am on the day.

There will also be a SECOND HAND TOY stall and SECOND HAND BOOK  stall which would welcome any donations also dropped off to the Bowling Club in the morning of the event prior to 11:00am.

Really looking forward to seeing you on the day.

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A Second Call for Silent Auction Donations for the Family Fun Day

Preparations are well underway for the Family Fun day on the 26th of October at Balgowlah Bowling Club. Many thanks to all of those who have donated babysitting time, clothing Store Credit Vouchers and Movie Vouchers to name but a few. If you’re interested in donating don’t forget that I’m hoping to have the list finalised by this SUNDAY 21ST OF SEPTEMBER so keep them coming in by either pledging your donation in the comments below or emailing me:

alimalone@optusnet.com.au

A Return to Club WestMed

After a very busy month, the longest stint we’ve had at home since his ALL diagnosis our little guy is in residence and holding court back on The Variety Ward. Another new infection, a new species in his line and this time constipation, though the latter definitely not enough to earn in patient status but the former 7 days on IV antibiotic. It’s incredibly frustrating as he’s in really good spirits and we were definitely getting into the rhythm of life beyond the hospital.

 

Pete and I managed a very relaxing overnight stay in the city, whilst our Ed had his “big boy holiday” at Bear Cottage with the very important job of looking after Frankie the resident Labrador. The overnight stay was a big hit and it seems he too was a very popular guest winning many friends up on the hill overlooking the ocean.

 

On another note I’d like to share with you another life lesson #125 on one of the things you never did before you had a chronically ill child. I used to look at great disdain at those parents who were suckered into putting $2 into the ride machine every time they went to the shopping centre. I thought once you start, the kids will never stop haranguing and harassing you to do it each time you visit……and whilst this is true, I think you’ll agree the smile on our little guys face is worth way more than the $2.

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And so, after a rough few weeks for me, basically boiled down to sleep deprivation and adjusting to a change of pace at home with 3 kids and caring for a chronically ill child I was definitely getting into the rhythm of it all at home, enjoying some respite care for our guy whilst I was hatching some exciting new plans for our foundation………which brings me to my next post.

A Call for Donations for the Silent Auction

Feeling like you want to jump on the band wagon and help in some way, then why not pledge a donation for our Silent Auction which will be held on the Family Fun Day on Sunday 26th of October.

Donations could be small or large, from your work place, a gift voucher you purchase and donate, a service you may wish to offer (e.g. a nights babysitting, a holiday house you have access to), the list is endless and don’t hesitate to be creative.

The Donation pledge will only be open for 2 weeks and will close on Sunday 21st of September.  Please offer your pledge in the Comment Box Below, and remember don’t be afraid to be creative.

Some Press- hot off the Press from Today

The awareness campaign is ramping up as we move closer to the Family Fun Day on Sunday 26th of October and we are starting to hit the press.
This one was from the Daily Telegraph on line with the link, but in case it falls off, below is the article in full (wish I could put a filter on those wrinkles…..they’re a shocker when the pic is so big and online:

SYDNEY9C-18C

Enter location
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Regional NSW
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Classes & Workshops
Fitness & wellbeing
Sport
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Family event

Help little Eddie who has two rare diseases, says mum

Mother Ali Malone with son Eddie, 4

Mother Ali Malone with son Eddie, 4

When Eddie Sharp was diagnosed with a rare disease at birth known as ‘childhood Alzheimer’s’, it was a devastating blow for his family.

But then shockingly, when he was two, it was discovered he also had a rare form of cancer, totally unrelated to the other disease.

His mum Ali Malone, 41, and dad Peter, 43, who have two other children, said the news was “mind-blowing”.

“We took a deep breath and said: ‘Right, how will we get through it?’” said Ms Malone, from Manly Vale.

But, despite their own personal plight, they are not interested in sympathy, but in raising awareness of rare diseases, in particular, Neimann Pick Type C.

Mother Ali Malone with son Eddie, 4, who has two rare diseases and his mum is raising awa

Mother Ali Malone with son Eddie, 4, who has two rare diseases and his mum is raising awareness of Neimann Pick Disease Type C, which is described as childhood Alzheimer’s.

The genetically inherited disease means Eddie is unable to process cholesterol properly. The cholesterol builds in his liver and spleen and eventually in the brain, doing irreversible damage.

Known as the ‘childhood Alzheimer’s’, there are an estimated 15 other cases in Australia, but there is no cure.

His parents were originally told he would not survive 18 months.

But, Eddie has astonished doctors by battling on, especially as he is also now fighting another rare disease, Acute Lymphoblastic Leukemia, which he was with diagnosed last year.

Neimann Pick Type C is slowly robbing Eddie of his motor skills and he is no longer able to walk. Eventually his mental health will also deteriorate and he will suffer dementia.

“He walked before he was diagnosed with leukaemia, but he got so sick he lost muscle tone and I don’t think he will be able to walk again,” said Ms Malone.

Ms Malone said that although Eddie’s cancer is rare, because it falls under the oncology umbrella, there was a lot more support for him.

Eddie spent most of last year in hospital undergoing treatment, including chemotherapy, and was offered play and music therapists. There was nothing offered to Eddie as a sufferer of Neimann Pick Type C.

Despite his trouble Eddie is a cheeky chap, according to his mum.

“He’s spent the last 18 months with me or someone by his side the whole time, so he’s used to a lot of attention,” said Ms Malone.

“He’s also got as good sense of humour.”

The family is backing a research project being conducted at the Florey Institute of Neuroscience and Mental Health in Victoria looking to find a treatment, not a cure, for Neimann Pick Type C. The research could also lead to a breakthrough for Alzheimer’s patients as the two conditions are closely linked.

Only three families are involved with Australian NPD Foundation which is trying to raise $100,000 to support the research. If you want to help go to cure4edsharp.wordpress.com

A Family Fun Day is being held at Balgowlah Bowling Club on October 26, and some of the proceeds will go towards the research project.

And this is from the Manly Daily hard copy

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AND HERE IS THE LINK:

http://www.pressreader.com/australia/manly-daily/textview

 

Our little guy, enjoying reading up on his story

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Fundraising Credit Roll

2014 Fundraising Table

We are extremely overwhelmed by all of the generous donations that have been made this year by individual donations directly into the Australian Niemann Pick Foundation but would like to make a special thanks to the following:

 

Date Location Director Assisted By Box Office Takings
March Bunnings Cake Stall Julie Meynell  Angela JacksonSadie Davis

Linda Raines

Nicole O’Donnell

$ 2500
May  Movie Night at Cremorne Orpheum  Ali MaloneNicole O’Donnell Julie MeynellAngela Jackson

Sadie Davis

 

$5 700
August Judy Sharp’s Bridge Day  Judy Sharp Margo LanderMargaret Sharpe

Margaret Fraser

Cathy Vaughan

Emma Stiles

$3800
April-September Judy Sharp’s Birthday Club Lunch Judy Sharp Jenny WadeFran Durand

Robyn Bamber

Rosalie Moate

Margaret Sharpe

Margaret Fraser

Joan Curtin

Di Woods

$1700
April-September Judy Sharp’s Book Club Judy Sharp Numerous Participants $500
August Gail Neeson’s 60th Birthday Celebration Gail Neeson Debbie McInnesGlennys Campbell

Margaret Malone

Daphne Marshall

Sharyne Waddell

Cecily

Anne Culleton

Jan Rooke

$500
August Pub2Pub Run Jo Quarrell Natasha GennusaAlyson Perry

Stephanie Quinn

Jo Ingleton

Cris Unwin

Sania Saady

Jo Allen

Sascha Chahwan-Harris

$2 264