A little guy with a big journey
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
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.
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.
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.
Age group
Kids (0-12)
Teens
Adults
Seniors
Family event
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 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
AND HERE IS THE LINK:
http://www.pressreader.com/australia/manly-daily/textview
Our little guy, enjoying reading up on his story
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 |
The fundraising momentum continues with another 2 fundraisers since our Movie night in May, both organised without me (can you believe it?) and so a very big thank you is long over due to all of those who organised, participated, donated or supported.
Judy Sharp’s Bridge Day
At the end of July, Judy Sharp (Pete’s Mum ) and her merry band of helpers hosted a Bridge day in the home of Margo Lander who was very kind in opening up her home to 50 card playing ladies. My sister in-law Cathy Vaughan and her daughter Emma Stiles provided the amazing sandwiches and delicious cakes along with some super friendly service I’m told. Ed and I were hoping to make it along but unfortunately we were shacked up in Club WestMed.
Sandwich fillings were planned carefully well in advance with rehearsal recipes, tables, chairs and cards borrowed from Pymble Golf Club and the day was an amazing success raising around $3 800.
Judy Sharp’s Birthday Club
When not playing bridge or golf, or raising money through her Book Club Judy is off lunching with a special group of her friends who have decided to host their birthday luncheons in their own homes and donating the proceeds of what a restaurant bill would have cost them. In just 6 months they have raised around $1700 so keep on lunching ladies in your homes- its an amazing amount of money to raise.
Pub2Pub Run-Jo Quarrell’s Cure4EdSharp Team
Earlier this year I was contacted via email by another Mum in Isabel’s class whom I had never spoken with, Jo Quarrell. She was aware of our little guy’s journey and was inspired by him to come out of running retirement and enter a Cure4EdSharp team in the Pub2Pub Run if I supported the idea. You can only imagine how touched we were by her motivation and kindness.
After many months of hard training Jo ran the 14.5km race in 70 minutes whilst the rest of the team (myself included) took a leisurely walk strolling crossing the line in around 2.5 hours.
It was beautiful sunny day and the post-race work out consisted of bacon and egg rolls and some well deserved bubbles.
A big thank-you to Natasha Gennusa, Alyson Perry, Stephanie Quinn, Jo Ingleton, Cris Unwin, Sania Saady, Jo Allen, and Sascha Chahwan-Harris for joining the team and many thanks to all those in the St Kierans community for supporting the team.
The Walkers at the Start
The Runner- if she wasn’t running so fast you’d be able to read the Cure4EdSharp written down her arm
The Walkers at the end
Post Event Rub Down
As always we are ever so touched by the kindness and generosity of all of those around us- the strength of the human spirit is amazing in times of adversity. So thank-you very much!!!
All of the monies raised from these fundraisers have gone directly to the Australian Niemann Pick Foundation to be passed directly onto the Howard Florey Research Institute. To date the Australian NPC foundation has raised more than $80 000 so we are very close to the $100 000 target to keep the project going.
More information regarding this project can be found at http://npcd.org.au
A message from the President of The Australian Niemann Pick Foundation
This was actually posted previously as a blog message but for those of you who missed it.
Team Eddy is striving in fundraising and I am so proud of the ones who have come on board to help Eddy and those alike with NPC including my own two sons, with our goal to finalising this crucial treatment research that is so promising in Melbourne University. I am very very proud and overwhelmed to announce that on the 6th August I attended another research update meeting with the scientists and researchers and presented them with yet another Australian NPC disease Foundation cheque of a further $20,000.00. That brings our whole total donated from hard personal family and friends fundraising efforts since January this year.. That’s on 7 months… To a whopping $80,000.00 contribution. The head of the research and the Scientists together with the financial department of the Florey institute at the. University of. Melbourne are to say the least stunned with the efforts of our foundation. They didn’t truly believe it was a reality to raise such funds in time to continue the research, but we have done it. We have ensured to date, and we still have to continue to raise funds contributing to $120.000 per annum, to bring this research to human trial , which could be about 18 months away, hopefully sooner. I thank you all involved with. Team Eddy for your continued fundraising efforts and ensure you, you are truly making a difference in this, as are the 2 Victorian families involved. Also, I would like to say from another mother to NPCdisease, thank you for supporting Ali. And her family on Eddys journey, moral support and loyal friendship go a hell of a long way, when dealing with your child’s terminal prognosis. Eddy won my heart a few years back when I met him, and it’s easy to see why he and Ali are so loved and supported. Keep up the good work Team Eddy.
Xx
Mandy Jacobs, president Australian NPC diseaseFoundation Inc Mother to two…Mattthew 26 and Timmy 24 , both NPC
I realise I’m well overdue on an update for our little guy as well as bringing you up to date on where the Fundraising has been and is about to take you.
The rollercoaster continues with more up than downs though a few twists in the middle. I must admit up until about 2 weeks ago I’ve found it a bit tough going, but more on that later. To be honest I can’t believe it’s been 2 months since my last post so I’ll take you back to where I last left off in June.
After 10 hours in theatre having his lungs washed, 2 days of being intubated, 7 days post procedure in ICU and 3 more days back on the ward we were finally discharged. He was in fair to pretty good spirits although still requiring oxygen so to be honest I was wondering if the entire ordeal was worth it. Within a few days of being at home he really picked up quickly and despite a number of snotty virus’s, some involving hospital admission he’s managed to stay off his oxygen during the day since then which certainly makes life much easier for all.
By the time his birthday came around on the 6th of July he was in fantastic spirits and those that were able to make it along were lucky enough to see the little guy really holding his own and enjoying the party. I’m not sure where he got that gene from, but it did make this Mum super happy and extremely proud. It was a pretty amazing achievement and a milestone that many did not think he would make.
I’ll let the pics below speak for themselves but I’m not sure he moved from that spot in the lounge room where he entertained and courted those that gathered around.
The following week we managed a super special family holiday away of four fun filled days up at Shoal Bay. I have to say that I think it’s the best time we’ve all spent together in a very, very long time. I don’t think any over of us could believe that it was actually happening and so we all managed to leave our stress, tired, anxious, whining bits at home and just be grateful to be spending such precious together. We even managed to spend a morning together out riding bikes (well the younger 2 boys just hitched a ride on the back) which is the first real family activity like that we have ever done.
Having arrived home feeling relaxed and letting our defenses down the dreaded Flu Bug hit our house big time and it was only a matter of time before it took our boy down the M4 and back to Club WestMed. Isabel was the first to fall and she spent 4 days flat out in bed with fevers and lethargy, Tom and I fell next and there was 2 days when there were 3 of us having our temperatures taken regularly waiting for the next onslaught of panadol to be doled out. All I could hope was that I felt better by the time I had to take him into hospital. Another week in hospital on IV antibiotics was probably the best place for him, well away from the rest of the infectious family. The ironic thing was with the flu injection and Tamii Flu medicine on board he was actually the healthiest member of the family. It was also fortunate that Pete managed to dodge the bug.
Having fully recovered from the Flu and just getting back into the swing of it we had a call from the hospital one Saturday afternoon to say that he had tested positive to an infection in his line. They were happy for him to stay at home but the minute there was a fever we were to bring him straight back to hospital. Sunday morning he wasn’t great so we quickly got out of the house to enjoy some winter sunshine and family time before the temperature hit and it was another Sunday afternoon spent in ED. Another great lesson in living in the moment, not sweating the small stuff and taking nothing for granted.
A further week in hospital on IV antibiotics and off we went again. You can see the pattern emerging, we manage about 10-12 days at home before heading back for 5-7 days and at times it was all getting a little tiring. Fortunately even when he was in hospital he’s been reasonably well and in quite good spirits and dare I say it but it has been a good few weeks since our last visit.
Just over 3 weeks I hit a bit of a wall and was in desperate need of some “me” time which Pete and I arranged. It kick started around 11:00am with a massage followed by a long, relaxing lunch at Hugo’s with a couple of girlfriends and finished with a solo trip to the movies. Almost a perfect day and was exactly what I needed for a little recharge. As I was making the journey home feeling refreshed and rejuvenated I got the call from Pete- “ you need to get home quickly, he’s really sick this time”.
In my head, I thought here we go again, jump in the car, make the journey down the M4 and off we move through ED hopefully fairly quickly. The minute I walked through the door it was different this time. He was vomiting, shivering and shaking as his temperature jumped from 37.6 to 39.6 in less than 10 minutes.
For the first time ever we had to call an ambulance as we were worried he was about to either turn septic given the quick temperature rise and sudden onset of illness or have a fit, which is on the long list of NPC symptoms we are yet to experience. He’d also as he’d been in pretty good spirits when Pete put him to bed so the sudden change was quite alarming.
2 ambulance officers arrived along with a Pediatric Ambulance Doctor and off we proceeded rather quickly under lights and sirens. We were hoping to travel directly to Club WestMed but as he was deteriorating so fast it was decided that we would need to stop at Royal North Shore to stabilise him. 2 Ambulance rides later, 16 hours in 2 Emergency Departments and just 3 days in hospital on IV antibiotics we have never found the cause of this sudden episode.
Not long after we arrived at Royal North Shore and as soon as his temperature came down and fluids on board he stabilized very quickly and seemed quite well. In just 4 eventful hours he had one the hearts of the ambo’s, Dr’s and nurses he had met that evening. 2 of the nurses especially took a shine to him because as the Doctors were inserting a cannula into his arm (not normally done to him at Club WestMed due to his double lumen Central Line) he said “ I don’t need a Doctor, just the nurse”……you can only imagine the smile that brought to all those attending to him in the Resuscitation Bay.
One of the Doctors had actually remembered him from our visit to ED in January 2013 in the week prior to his ALL Diagnosis and admitted that based on his initial blood results taken that on that day he suspected he had some sort of blood disease.
The episode that evening had reminded me of the night sweats he had been having just prior to being diagnosed with his ALL. Obviously we didn’t have the concern that he was turning septic, as he didn’t have a Central Line inserted.
So with a Bone Marrow aspirate to check his Leukemia levels booked for a few weeks down the track the procedure couldn’t have come soon enough. About a fortnight ago we spent a scheduled overnight having sleep study, followed the next day by the Aspirate and CT scan of his lungs.
Earlier this week we received some good news. The CT scan depict a big improvement in his lungs after the full lung lavage back in June. In addition to this there were no Leukemia cells depicted in his blood. This will enable him to continue on oral maintenance Chemotherapy in the hope it will continue to stay away. If they had depicted some Leukemia Cells he would have required more intensive IV Chemotherapy treatment and possibly a Bone Marrow transplant, something that he probably wouldn’t survive.
In terms of the lungs it also suggests that if and when necessary they will consider continuing on with the full lavages intermittently as a form of therapy since it gives him a better quality of life off the oxygen. They were also quite pleased that despite the runny and snotty noses shared by the not so little brother and the bad cough our little guys has that he remains in good spirits and more importantly out of hospital, so it can only be good on that front.
If anything his blood results are improving and so they have had to increase his Chemotherapy doses as there is a certain level that they like to keep their bloods at to ensure the Chemotherapy continues to kill off any Leukemia cells.
It’s been a bit of a challenge adjusting to longer stretches at home on many levels and as I’ve mentioned I hit a wall about 3 or 4 weeks ago but I really think I’m working through that at the moment removing some of the blockages and moving through some of things I want to be working on including getting moving on the Fundraising front with some very exciting months ahead.
At the moment I’m feeling lighter and have found a little more time for me. We have the lovely Jannine who is our neighbor and also a qualified career that looks after him for 3 hours on a Tuesday and Thursday. And today was a very special occasion on so many levels as he’s gone back to his beautiful Family Day Care lady, Amparo along with Tom for a couple of hours this morning which is another activity I never thought would happen again.
This Saturday night he’s booked in for one night respite at Bear Cottage so that Pete and I can have a totally childfree night in the city. I’m not brave enough to book anywhere to stay until I’ve farmed Tom and Issy to Ange and Ben’s and I know that Ed is tucked up safely in Bear Cottage because as we all know 3 days is a long time when you’re Ed and anything can happen.
In the next day or so I’ll post a long overdue Fundraising up date, A Fundraising Hall of Fame along with a call for donations for the Silent Auction at the Family Fun Day on the 26th of October.
In other news, Issy was taken to the snow by her aunty, Grandma and Gramps and Tom has officially entered the terrible two………and don’t we know it, all I can so it’s lucky he’s so cute and very charming!.
In the meantime, enjoy the pics from the last few months.
The 4th Birthday Celebrations
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The 2nd Birthday (you can tell he’s the 3rd Child)…at least there was cake
Brothers in Arms
Happy Days- hours before another Sunday Arvo in ED
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Randoms to Enjoy
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cure 4 ed 