Movie Screening and a call for donations

Yes, it’s been a long time since I’ve been on the blog I know but it’s definitely time. To be honest we’ve been concentrating on living  in the moment and enjoying life day to day  since there’s no denying the lights are certainly dimming on our little guy as he’s moves closer to the end of his journey than the beginning.

As part of our little guy’s 6th birthday celebrations we’re holding a fundraising screening of Roald Dahl’s BFG on Thursday 7th of July at 3:00pm in the Cremorne Orpheum.

The proceeds from this event will be shared between Bear Cottage, Arranounbai Special School and a medical research project for the Australian Niemman Pick Foundation- 3 special places who offer amazing help and assistance to our little guy. We’re hoping to purchase a reclining chair with wheels for Bear Cottage worth approximately $1500 and the remaining balance to be split evenly between funds for a school bus for Arranounbai Special school and a medical research program for an NPC treatment drug.

The movie booking link should be up in the next day so watch this space,  but in the meantime I’m looking for donations for the raffle. It may be toys, food, wine, experiences for kids, adults or families- no gift too large or too small, anything and all will be gratefully accepted. Please let me know by  next Monday 27th of June of anything you may be able to donate towards the raffle.

As always we are extremely grateful for your support which is given to our family in so many different ways and hope you can join in the birthday celebrations in some way.  After all how could we not organise a fundraising event for our Bear Cottage Super Hero week pin up boy?

BRC3045 SHW 2016 GoFundraise_FA

Cure4Ed Pub2Pub for Treatment Drug

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Hi there,

As you may have seen recently the president and founder of the Australian Niemann-Pick Foundation Mandy Whitechurch along with Kellie Adams (another NPC Mum) have been invited to attend the International Niemann-Pick Disease Alliance Conference to be held in Germany in October this year. This is an amazing opportunity to hear and contribute to the most up-to-date information about NPC clinical trials, scientific developments and patient organisation activities from around the world. Of special interest is the clinical trial of a treatment drug, Cyclodextrin which has shown some very promising breakthroughs in the USA, Europe, South America and Japan.

 

It is hoped that Mandy and Kellie, along with the support of Professor Mark Wolterfang, an Australian based Neurologist with a special interest in NPC will be able to access and bring this trial of cyclodextrin to Australia so that patients like Edward will have the opportunity to benefit from this drug which appears to further delay the onset of NPC symptoms.

 

It is estimated that this 3 day conference will cost approximately $5000 for Mandy and Kellie to attend which would include flights, accommodation and conference registration. I am hoping that we may raise a good proportion of this through our Cure4Ed Pub to Pub to running team which is a running on the 23rd of August…..yes I know just 10 days away.

 

I’m more than aware of fundraising fatigue and hesitant to ask again for support but if you are in a position you may be able to assist either by sponsoring one of our team members by clicking here:

https://pub2pub.gofundraise.com.au/payments/donate/page/346788

 

Or you are more than welcome to join our team and run or even walk the 13.5km which is what I’m planning to do. There is also a 3km short course which Pete and Isabel are participating in and you of course are welcome to join either course length. Check it out here:

https://pub2pub.gofundraise.com.au/cms/reg2015 to register with the Cure4Ed team.

 

There is a large proportion of our team from St Kieran’s Manly Vale, along with some other family and friends who have joined and we would welcome the opportunity it if you would like to join.

 

I ‘m in the process of arranging some caps who have been generously donated by CapsRus (http://www.capsrus.com.au/).

 

If you are able to support then many thanks in advance as we are always ever appreciative of your support but as I have learnt over the last few years it’s not possible to do everything all of the time so no worries if you choose to pass on this one, I am very conscious of fundraising fatigue.

 

As always we are ever appreciative of the love, care and support we receive from family and friends, it certainly helps to smooth the bumps when things get rough.

 

All our love,

 

Ali, Pete, Isabel, Ed and Tom

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Many Thanks for Supporting the Cure4Ed Minions Screening

I would like to thank all of those who came along to support our Cure4Ed Movie night screening of The Minions. In total we raised around $4000 with $3, 100 going to the Australian Niemann Pick Foundation and $600 to Arranounbai Special school, two very special organisations that assist our Edward.

Some of you may already know that the Australian Niemann Pick Foundation is currently supporting a specific research project being conducted at The Howard Florey Institute in Melbourne. Despite making great progress both with NPC and related Alzeimer treatments the project is relying solely on the funds raised by approximately 5 or 6 families in Australia who are affected by NPC. The project has been close to being halted on a number of occasions, and it’s nights such as these that ensure the research continues. This night alone should secure another few months of research, and this is how close to the wire it is operating. More information can be found: http://npcd.org.au/create/category/npcd-research-updates/

Once school returns I will be in touch to let you know exactly how the Arranounbai Special School will spend it’s $600.

On a personal night, it’s events such as these that remind us of just how supported our family is and how lucky we are to be surrounded by this. It certainly gives us strength and helps smooth the journey for the bumpier parts. For me, it feels so great to be organising something so positive and fun for our little guy and the joy to brings not just to him but all that participate. The events of early May were definitely a stark reminder of how important this is are to our family.

Congratulations to the raffle winners:
Magnum of Moet: Angela Jackson
Flip Out Voucher for 2: Jaqui Manning
Minion Packs: Sainsbury Family, Madeleine O’Toole
Smiggle Packs: Terence Malone, Mel Skarf

All of the above prizes were generously donated by Georg at Moet Hennessy, Flip Out Brookvale, Smiggle Australia and The O’Donnell Family

I would also like to say a very massive thank-you to Nicole and Madeliene O’Donnell for their help and support, especially with regards to the ticketing. I’m sure you’ll all agree that it was a very smooth and well organised registration process.

Moving forward, now that the funds have been banked, pizza and popcorn settled it may be time to think about joining the Cure4Ed Pub2Pub team. Early bird discount registrations close this Sunday 5th of July and if you’d like to walk or run with our team, then start here: http://pub2pub.gofundraise.com.au/page/AliMalone

As I’ve written before we are often overwhelmed by the generosity of the human experience in difficult circumstances and last night was no exception- thank-you all so much for the generosity and support,

Warm regards,

Ali, Pete, Isabel, Ed and Tom

Cure4Ed Fundraising Screening of The Minions

 

 

 

I know its been quiet on the fundraising front as we’ve just been enjoying “being”- life, school, work, university, holidays etc but yes I realise it’s time to get back on the fundraising wagon to raise some much needed funds for both NPC medical research (the specific project The Australian Niemann Pick Foundation is funding) and Arranounbai Special School-the beautiful place which adds so much value to Ed’s quality of life daily.

 

If you are keen and able to make it along to a screening of The Minions at The Cremorne Orpheum on Wednesday 1st of July at 4:00pm then please purchase tickets via the link below.

Parents of older children feel free to drop off whilst the movie is on as it’s a private screening. There’s plenty of places in the neighbourhood, including the Barrel Bar(www.barrelbar.com.au/) to enjoy some school holiday respite if you’re not keen on the movie.  We’re serving pizza at 6:20pm in the upstairs Orpheum Bar after the movie so be sure to purchase at pizza pass if you’re planning to hang around for this.

Invite attached below, to purchase tickets click on the Try Booking link here:

http://www.trybooking.com/143008

MovieInvite

Arranounbai Special School wins $25 000 from Sunrise

Blog update on our little guy coming soon, along with some exciting new fundraising events but in the meantime, couldn’t resist sharing this with you all.

 

Stephanie Hopkins is the Assistant Principal who made this winning movie and is also little Ed’s teacher.  She is an amazingly passionate and dedicated teacher who’s energy, passion and enthusiasm is incredible and very much appreciated by all of those families who are lucky enough to have Steph in their lives.

https://au.tv.yahoo.com/sunrise/video/watch/28486951/sunrise-helps-a-school-in-need/

Aside from the great presentation piece, the wrap from the presenters after the cross is pretty fab too.

 

Here’s the follow up piece in the Manly daily online this evening, with a piece to appear in tomorrow’s paper:

http://www.dailytelegraph.com.au/newslocal/northern-beaches/arranounbai-wins-25000-in-nationwide-minions-competition-for-school-makeover/story-fngr8hax-1227404019159

Arranounbai on Channel 7 Sunrise- Thursday 18th of June 2015

Yes I know it’s been a very long time between posts and having just begun mid semester uni break I’m madly working on an update on our little guy and some exciting fundraising events, but I just have to share this with you immediately.

 

As most of you know, when not in hospital our little guy continues to attend Arranounbai Special school full time and has been blessed with a very special and amazingly dedicated teacher, Stephanie Hopkins. Steph is one of life’s very special people who’s passion, energy and dedication certainly goes way above and beyond her job description. She plays a very special part not just in our lives but in all of the kids at Arranoubai.

 

In just 3 days Steph shot, edited, submitted and WON this 1 minute video winning $25 000 from Sunrise and Universal Pictures for a “Minion Make over” to help improve the school.

 

https://www.youtube.com/watch?v=TgtmSZF4_NA

 

On Thursday 18th of June both the film and the presentation of the cheque to the staff at Arranoubai will be broadcast on Channel’s Sunrise program sometime between 07:00 and 9:00am so have a watch if you’re able.

 

In the meantime mark in your diaries Wednesday 1st of July, 4:00pm for a Cure4Ed fundraising screening of The Minions at Cremorne Orpheum. Tickets sales will be open in the next few days.

A Letter to Tom and Isabel

I didn’t write this letter, but it echoes my sentiments pretty closely.  The only thing I would add as another benefit are the rock star car parks  and the special family days we haven had thanks to  Bear Cottage and Camp Quality.

Here is the link
http://themighty.com/2014/12/dear-sibling-to-a-child-with-special-needs-let-me-tell-you-why-youre-amazing/

And some photos taken yesterday just minutes after I had read the article. You can imagine the tears and emotion it evoked:

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Here is a copy of the text of the article which appeared on the website

The Mighty
Dear Sibling to a Child With Special Needs, Let Me Tell You Why You’re Amazing

Katie Corkern
Hey there,

I heard you’re the sibling to a child with special needs, and I wanted to write you a letter explaining why you have a one-up on life. I know your life might seem hard or different from your friends, but trust me, you most definitely will be more prepared for this life than anyone else. Let me explain…

I heard you deal with more than any child should. Your parents spend a lot of time away from you. You know they’re taking care of your sibling, possibly bringing him or her to the doctor. Maybe your sibling is admitted in the hospital often; your parents might be on the phone taking care of insurance business or even physically caring for your sibling. I know, my friend. You see this more often than not. You see the love your parents have for your special sibling, and it’s being embedded into your heart. You see the patience they exhibit when caring for him or her, and it’s being buried into your soul. You see that your parents never stop trying to get what your sibling needs, and it’s being ingrained into your mind. You see your parents exhaust themselves so your sibling and you are well taken care of, and you’re learning from this. You may not know it, but all of these little things are teaching you traits of how to be an amazing person.

I’m certain that being the sibling to a child with different needs is a struggle. I know you have those moments where your heart stings with jealousy, where you’re worried sick over your sibling. I know you have those moments when you get mad because you can’t go to all the birthday parties you want to. All of those times are totally understandable. You have a right to be upset every now and then, but I can bet that you can think of some pretty cool things you have in your household that your friends don’t. How about all the cool equipment your sibling has, huh? I know you’ve climbed into that wheelchair or played with his super cool assistive technology toys. How about getting to see your sibling reach a milestone and that proud feeling that overcomes your body? You get to experience a friendship like no other. Your sibling completely and utterly trusts and loves you with a love that can penetrate the coldest heart. They look at you with those beautiful eyes and know you’re there for them no matter what. The bond you have is indescribable. You’re their sibling, their friend and their protector. Your sibling might not speak verbally, but we both know your hearts together carry on conversations us adults could never possibly understand. And I tell you what, we’re so extremely jealous.

Did you know your parents watch you and your sibling’s interactions on a daily basis and their heart literally wants to burst out of their body with pride and love? They see everything you do for your brother or sister. They notice when you walk by and give them a quick kiss, stroke their hair or give them a hello. Your mom and dad love to witness you sticking up for your special sibling or when you go out of your way to make sure he or she is included in everything. They quietly observe you as you help with therapies, put oxygen masks back in place and hold hands during tests or doctor visits. Your parents recognize every time you perch yourself on the counter to help prep medicines or bring them a diaper, a syringe or whatever else they need. You do such a crazy amazing job helping your parents. It surely takes a wonderful little boy or girl to do what you do on a daily basis. I’m sure they tell you thank you, but sometimes if they don’t just know they are beyond thankful for you.

But most important of all, my dear one, the reason you are going to rock this life: You know true love, you know true heartache and you know what’s truly important. You have lived a life that takes a strong heart and a strong mind. You will mature much faster than your schoolmates (don’t be too hard on them), you’ll exhibit compassion that astounds others, you’ll know more about healthcare than 95 percent of adults you pass on the street, and you will most definitely have a wicked sense of humor that will enable you to keep life joyful no matter what. When you were introduced to your sibling with complex needs for the first time, that moment in time is pinned in the stars, for it was then that your destiny was determined. You will be an awesome human being and you’re going to change lives for the better… all because you were the sibling of a child with special needs. Rock on, my brave friend.

All my love,

The momma of a child like you and your special sibling

This post first appeared on Mommies of Miracles.

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A Christmas Card from the Blog

For those of you that haven’t yet received our  Christmas card in the post please accept this as our offering, for those that have……well to be honest I haven’t got around to sending them yet so this could well be it.

Despite our month being bookended by stays in Club WestMed it certainly has been a very big and positive turning point in our journey. It may almost be safe to say that we are probably in the best place we have  been since his ALL diagnosis.
This is a vast improvement since my last post when I found the going tough and to be very honest wasn’t sure if our little guy would be here at Christmas.  It’s amazing how much can change in 4 weeks.

As you know the little guy had his line removed in the middle of November. During this stay, Radio 2UE held their annual radio telethon which was a great reminder of just how far our friend has travelled over the past 18 months. I’m not sure I’ve shared this pic of him before, but the Fundraising Department at the hospital have been using his beautiful bald head and baby face on some of their collateral including some rather large pull up banners which have been doing the rounds at their fundraising events. A number of Doctors and staff have commented on the banner and when it’s not on the road it sits pride of place in the entry to the Fundraising Department. You can only imagine the reaction from some of the radio presenters faces when they saw just how far he had come, bringing the odd tear to some. The banner itself is certainly larger than life

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In my last post I made tongue in cheek jests about swimming and surfing lessons and let me tell you, I wasn’t very far off the mark. Within 24 hours of being discharged from hospital he found himself floating down at Little Manly and absolutely loving the water and freedom it’s gives his legs.

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And it’s not only the sea but the baby pool which was way too cold for his brother and sister

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Loving it so much he insisted on having his feed in there

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After 2 hours in his baby pool he asked me to “fix it up” pointing to the pruny,  wrinkling skin on his hands and feet.

We’ve had numerous visits to the beach and local pool and I’m now working on Pete to have our own pool put in at home, after all Ed’s been through it’s the least Pete could agree to (just joking.

More on the school in a bit but whilst on the swimming front it’s worth mentioning that his end of school picnic was down at Collaroy Beach this cool and windy Wednesday just past. The beach and park is well equipped for kids with special needs and the surf club has large water wheel chairs that sit on top of the water in the sea pool. His beautiful teacher took him on the water chair as they’re quite big and difficult for him to sit up but this was definitely not enough wet and water so she jumped in him with him and had a proper swim despite the cold temperatures- for her, not him of course.

As a result of his enthusiasm of the water the up shot of this is that Collaroy Beach Surf club is about to start a summer swim program called Sea Turtles which is a nippers based program for kids with special needs and I was asked if I would like him to participate. Who would ever have thought our little guy selected to start 2015 with a Nippers program? Always full of surprises.

Perhaps the biggest and most exciting news though is that Edward has started at Arranounbai School which is a K-12, NSW Government funded school for kids with special needs and located just up the road from us at Allambie Heights. Since I was so concerned about his cognition and development, the school Principal and staff were absolutely amazing in fast tracking his enrolment process and arranging school transport for him in an unbelievable amount of short time.

Prior to his official enrolment he had been spending short periods up there, initially for art class and then as more teachers met him he was invited to participate in more and more classes, winning many friends along the way. His official enrolment came through whilst he was having his central line out so in a matter of 3 days it was hospital, beach, and school on the school bus.

For the passed month he’s been going 3 days a week, the same 3 as Tom is at Ampo’s Family Day Care and I think I’m going to keep it like that next year.

The pictures speak for themselves but it has been a massive turn around for the best on so many levels. He has a wonderful teacher and support teacher who have worked really hard to ensure a smooth transition and been so kind and caring to our little guy.

He absolutely loves it, to the point that he cried on his first day off school after 3 days at school and kept asking me all morning when he was going back.

It’s been great to have some time to myself catching up on 2 years of Dental appointments, Health check ups, tax, filing, sorting cupboards in addition to managing and navigating my way through the system of living in the community with a child with special needs. As you all know we have been well supported and connected to program’s through the hospital but as we spend more time at home and less time at this hospital I’m learning there’s a whole other world out there of support program’s, respite services and Government funded initiatives all of which take sometime to wade through the maze. As a pushy, articulate and educated person I’m finding it challenging at times to muddle my way through the process so I’m sure there are others who may find this more difficult than I. There’s a business in that somewhere but I’ll leave that alone for now.
His new wheelchair alone has involved large volumes of paperwork, several appointments and a 6 month wait.

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I’m really looking forward to getting more involved with the staff, parent and students up at Ed’s school and I’m so pleased that we’ve found such a happy place for him. It’s also been a positive step for me in opening up so many more opportunities in the community.

And so in true Eddie form he ended his school year with a bang. On Wednesday ( as you know) he spent the day at Collaroy Beach for his school picnic, swam with the teacher and convinced the lifeguard he was the perfect candidate for their Sea Turtle swim program. The minute he got in the car to collect Issy from her last day of school he became tired, lethargic and the temperature was up- all of which was enough to land him into the Emergency Department at Club WestMed on Wednesday evening.

The source of these symptoms unknown and more than likely viral or just exhaustion from such a great month at school. At this stage it’s hoped we’ll be home today, Saturday. Here’s hoping because we have Christmas to celebrate with family and beach holidays at Crescent Head, Shoal Bay and Palm Beach planned throughout the month of January.

With the 3 kids in school or day care we’ve had a plethora of Christmas activity all of which helping to enjoy and get into the Christmas spirit. We’ve managed our annual to Christmas trip to the city and Opera House Baby Proms

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And enjoyed a special day at The Bear Cottage Christmas Party

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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

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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