Hope For Stacy – Car Wash Oct 10-11 @ The Brick 1525 Pitt st Cornwall
I’d like you all to meet my daughter Stacy. In almost every respect she is a normal 18 yr old going to high school, planning for college, and occasionally doing things that Mom and Dad are not so crazy about. Stacy has a wild sense of humor and is a very strong young woman, and she even likes Bob Marley. But all is not right in Stacy’s world. She was born with SMA. Spinal Muscular Atrophy is a form of MD and degenerates motor neurons. Basically it is like a road block at the spinal cord that prevents any stimulation of muscle growth. Stacy is only capable of doing the most simplest of tasks. But even brushing her teeth or drinking a glass of water has it’s challenges. Most of what we all take for granted is beyond her ability, and it always has been.
We have been following the introduction of stem cell treatments for some time now, and though they are not available in Canada or the United States yet they are available in other places. The cost of these treatments is not cheap, and we have told that it involves 4 injections over a period of 4 weeks. Another place one 3 hour treatment every 6 months. After speaking to other people who have made the journey and had positive results we have decided to try and make it possible to provide Stacy with this opportunity to get “something” more than what she has. Even if it is the ability to roll herself over in the middle of the night. Any more independence that she can get would be a miracle.
Increased range of motion and overall strength and energy has been reported after receiving the injections. But the cost of this treatment is out of our capabilities. Including airfare, lodging and the injections themselves it is upwards of $26,000-$40,000. We have started a fund at the Royal Bank under the name “Hope For Stacy” and donations can be made to that fund at any RBC.
Over the next year or so we will be holding many such events and fundraisers to try and provide Stacy with this opportunity. We need volunteers, equipment, t-shirts, and all sorts of various items to put these types of things on. If you would like to get involved please contact me at admin@hopeforstacy.ca or show up at one of the events we have planned, we could use all the help we can get.
A very big thank you to Domino’s Pizza 1916 Pitt St who have generously offered to donate some pizza for the volunteers. Your support is greatly appreciated! And to Brian at THE BRICK 1525 Pitt St without you it would not have been possible. When other people and locations said no you stepped up and offered us a great location, thank you so much!
Update
The local story in the paper has generated a lot of interest in Stacy’s story. Ron Begg has offered to interview Stacy on his Cogeco cable TV program. Jason Christoff, who is the owner of “Physical Limits” has offered some memberships to aid Stacy’s cause. One of our readers and good friend has pledged 2 one week get-away packages to their villa in Mexico. We will be planning a dance and other larger events later in the year. See you all this weekend at the car wash!
October 10th. The Car Wash went very well with a lot of people stopping to give their support for Stacy and we raised $240 today! Thank you everyone that stopped by! We will be back out there tomorrow to do it all over again and hopefully do even better! We are on the way to making this a reality for Stacy.
October 14th. Stacy was on live Cable TV today. The program is called “I Begg your Pardon” and airs on Cogeco. Ron was nice enough to have us on the program and has pledged his support to help Stacy reach her goal. We appreciate the support and are very grateful 
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My Info
I am very happily married and raising 5 children. Trying to make sense of it all, and living life to the fullest.. And, I pledge to drive less in 2009.
Also, please take the time to read and sign this petition to help protect our children. Thank you.
You can see my other blogs here. And here.
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email: seandjx@gmail.com
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Beast, email coming your way
Your daughter is beautiful.
Let me know your thoughts and see what we can come up with together!
Patty
how can we help you?
For those of you who don’t know, I am Stacys’ Mom! I can’t say enough how excited I am to be embarking on this adventure in search of “HOPE FOR STACY” and her quality of life. I would venture to say I would do anything to improve her life! Even if it means a 14 hour plane ride ( I freaked out going one and half hours to NOva Scotia last year, I hate planes) to CHINA..
OMG – I GOTTA GO…JUST READ PATTY CAKES EMAIL TO BEAST…YOUR A DOLL…A KIND HEARTED WONDERFUL AND GENEROUS PERSON. STACY IS RIGHT HERE WITH ME AND WE ARE ALREADY PLANNING OUR FUNDRAISER DANCE TO ENCORPORATE YOUR IDEA…This will def. make Stacy’s hope a reality…
BBL –
Good things happen to great people!! My hubyy and I are happy to be able to help your family! (WAVES to Stacy)
We need to spread the word to everyone we know and come up with some fund raising ideas folks!! That way we can find a way to get this done. I would think a twitter account would help to get the word out. Getting people to retweet the message…I’m off to think about it, and talk to people who have raised money for others!
Grin
my twitter name is @SeanDj and it is already out there
Thank you for your support too oceans… Hugs
We can use all the help we can get
here is a link explaining SMA and includes some things I didn’t even know about some drugs that are given and will look into!
http://en.wikipedia.org/wiki/Spinal_muscular_atrophy
Stacy has most if not all at one point or antoher in her life of the symptoms listed! Overall muscle weakness although she falls into grey areas where she has had some symptoms from type one but not all and none from type 2 but has lived past her life expectancy of 2 years which IMO doesn’t justisfy categorizing her as type one at all! In other words, might be time for re-evaluation of exactly what level of this disease would she be if she were re-examined! MIght be worth it on many levels not only personally but in the name of medical research and understanding. Something to think about!
She was diagnosed ONCE at 14 months old… AS TYPE ONE! Perhaps it’s time to take another look. As you can see type one babies are very ill from day one..and don’t survive to be beautiful young ladies planning their college career
WAY TO GO STACY…MOMMY IS SO PROUD OF YOU!
clenched fists and feeding difficulties never were a symptom for stacy…
the biggest symptom besides never crawling or walking and the biggest fear is her weak cough and prone to chest infections FROM A COMMON COLD…due to lack of expiratory muscles and clearing ability. That has landed her in ICU on a very serious life threatening level 3 scary times in her young life! My hope is the stem cell injections will not only increase her quality of life in terms of her everyday strength and abilities …THAT WOULD BE AWESOME…but just as importantly to strengthen the muscles she needs to stay clear of a potentially deadly pneumonia!
This was in our local paper today.
Stem cells offer hope for Stacy
Posted By DAVID NESSETH DNESSETH@STANDARD-FREEHOLDER.COM
Updated 40 mins ago
The mirror reflection of Stacy Paul in her bedroom reveals nothing surprising from the neck up.
Like other teenage girls, the wall around her mirror is plastered with photos, her desk is littered with makeup and beauty products.
But beyond the mirror’s view are challenges that still remain invisible. Though Stacy sits in a wheelchair, no one can see her body’s muscles slowly deteriorating. They can’t see that in this same bedroom, the 18-year-old has to be tucked in by her parents each night, and removed each morning, one of the hundreds of every day things she’s too weak to do herself.
Stacy has spinal muscular atrophy.
“This has been my whole life, so I don’t know any different,” said Paul, whose doctors didn’t think she’d live past the age of two.
Now, Stacy says she has renewed hope. She’s been reading about stem cell research and her family has started fundraising to pay for a trip to China. There, she hopes to receive injections that could slow down the progress of muscle atrophy and possibly lengthen her life.
“Just for her to get inside our apartment is a major process,” said Shelly McAllister, Stacys’ mom. “This procedure would buy her time.”
Stem cell treatment isn’t available in the U. S. or Canada, which means more and more patients with a range of incurable diseases are making trips to places like China’s Beike Biotechnology. The procedure remains experimental, but Stacy says she has nothing to lose.
Stacyl intends to go to Algonquin College next year to become a youth worker, and she’s counting on the stem cell injections to give her the necessary strength.
One of the main reasons for the procedure is to strengthen Stacys’ weak lungs. She’s had close calls and numerous trips to CHEO because her lungs aren’t strong enough to allow her to cough properly. She knows that a common cold can prove deadly.
Stacys’ family says they’re aware of the controversy surrounding stem cell injections, which could cost them more than $30,000.
“Some people think it’s playing God,” said Sean McAllister, Stacy’s dad. “I just believe Canada is behind in this kind of medical research.”
Beike Biotechnology uses infusions of stem cells harvested from umbilical cords rather than the more controversial embryonic stem cells, but Stacy said she understands that some people still might not get it.
“They can say all they want sitting in their living room, but their perspective would be different if they were sitting where I am,” Stacy said.
Stacys’ family begins their fundraising campaign through car washes next week on Oct. 10 and 11 at The Brick on Pitt Street.
They have also opened an account called the Hope for Stacy Fund at the Royal Bank of Canada, where people can make donations.
To volunteer, or for more information about how to help, contact hopeforstacy@gmail.com
To see the picture in the article go here but let me warn you, my edited version of the article actually uses her first name where the author used her last name through out the whole article. No idea why?
http://www.standard-freeholder.com/ArticleDisplay.aspx?e=1973219
What a great story about your daughter. I hope everything falls into place quickly and your fundraising efforts are a success beyond your goal. I wish there wasn’t so much red tape and policies in the way of stem cell research. Other countries are going to leave us in the dust. COME ON CANADA, be a leader! I’m so excited for Stacy and pray all her dreams (and then some) come true
My husband and I both signed. I’m putting a link on my facebook page too.
I love purple so I’m floating out there as a purple cell hoping Canada does more for stem cell research.
People need to educate themselves more about this. Some guys at my hubbys work thought stem cell research harms a fetus or even kills one. Its frustrating that so much money will have to go into educating the public before the Canadian government decides its time to be a leader.
I’ve believed for a long time many answers to cures will be found in stem cell research.
CA ~ I told you about my girlfriend who’s a quadrapeligic. She did a lot with the Christopher Reeves foundation working towards stem cell research. I wonder if Stephen Harpers’ child suffered from a debilitating disease, would he change his position faster? I’m not sure what it will take to light a fire under the Canadian gov’t to move! Time is not something everyone has. COME ON CANADA – BE A LEADER!
I wonder as well patty…but I don’t have to for very long…
and thank you for signing..
http://www.stemcellcharter.org/
PLEASE SIGN THE PETITION TO PUSH CANADIAN LAW MAKERS TO STOP HALTING CURES FOR DISEASES THAT ARE POTENTIALLY LOCKED IN OUR OWN BODIES..
VERY COOL …I CREATED A COUPLE PINK STEM CELLS WITH MY SIGNATURE.YOU CAN EVEN CREATE A STEM CELL FOR THE DISEASE OF YOUR CHOICE…
Is it legal?
Currently, all forms of stem cell research in the U.S. are legal at
the federal level. That is, it is not illegal to make or work with new
embryonic stem cell lines. However, the use of federal funds for
human embryonic stem cell research is restricted to the cell
lines that were available as of August 9, 2001. Therefore, the
derivation of new embryonic stem cell lines can only occur
when scientists are working with non-federal funding. Some
states and private foundations have been supporting this work.
Some requirements of federal law, such as human
subjects protections, apply to state- and privately funded stem
cell research. For a complete discussion of the mechanisms
for oversight of stem cell research, see the National Academies’
report Guidelines for Human Embryonic Stem Cell Research.
It is legal to conduct research using blastocysts and to derive
new cell lines in most states, with some exceptions. Because
stem cell legislation is an area of active debate, please
visit the National Conference of State Legislatures at
http://www.ncsl.org/programs/health/genetics/embfet.htm
to learn about the laws in a particular state.
source – http://www.umassmed.edu/iscr/stemcellfacts.aspx
I am praying and hoping that she can get the help she needs and help out in whatever way I can.
Its a shame there is a stigma with stem cell research.. so many misunderstandings! So much can be cured with it!!
CeeA … How beautiful Stacy is,she looks just like her mama!! I’ve signed the petition and sent it along to my family and friends. Stacy was put our prayer list at church. I wish more people were educated regarding stem cell,I believe it’s only at matter of time before it’s made more readily available,as soon as more people are able to get it and positive results are documented,it will be.
You must so proud of Stacy,she’s a beautiful young woman with goals and aspirations,she will succeed in all she does.
You are blessed to have such a wonderful daughter.
GOD BLESS Stacy,my grandchildren now mention her in their nightly prayers.
Bless you all! I can’t tell you how you all have touched my heart with your kind words and love and support. I will pass your message on to stacy Terisa…your little grand children speaking her name in prayers in hopes they will be answered..Bless their little hearts and yours for taking the time to add her to your prayer list.
Thank you thank you thank you….
http://www.youtube.com/watch?v=hTQfERb9HVk
~I Hope You Dance~
Stacy for you. A video that means a lot to me. We are all part of a bigger picture and need to help one another along the way. Bless your whole family CA~ Lets help Stacy reach beyond her goals & dreams <3
what a beautiful dedication. Thank you pattycake! I’ll make sure she checks all this out!
Since stem cells have the ability to differentiate into any type of cell, they offer something in the development of medical treatments for a wide range of conditions. Treatments that have been proposed include treatment for physical trauma, degenerative conditions, and genetic diseases (in combination with gene therapy). Yet further treatments using stem cells could potentially be developed thanks to their ability to repair extensive tissue damage.[2]
http://en.wikipedia.org/wiki/Stem_cell_controversy
ok guys..update..I am still in my robe..it’s almost 2pm…and I have to go to work..
Spent all day making posters of the informative kind as well as the car wash posters that the “CLOWNS” with pink and yellow neon hair will be holding up at the street at the car wash.
I am almost finished my painted t-shirt…pink and yellow neon glitter glue…IT’S SO PRETTY. Will make sure we take lot’s of pics for you all to enjoy.
It might be raining…BUT WE’RE DOING IT ANYWAY…
CeeA … I w as recently diagnosed with PLS(primary lateral sclerosis) I now have assistive devices to walk(a leg brace and quad cane)eventually I’ll also be in a wheelchair,but for now I’m mobile,this isn’t about me,what I’d like to say is it’s very frustrating and when I’m feeling sorry for myself,Stacy is an INSPIRATION to me! Her STRENGTH,POSITIVE OUTLOOK,GOALS,FAITH and COURAGE has INSPIRED me more than I can put into words. THANK YOU STACY,GOD BLESS YOU! YOUR MY INSPIRATION,you’ll be in our prayers FOREVER.
Terisa…this IS about YOU and everyone else that doesn’t know that our bodies were designed to repair itself..with a little help.. MR. BUSH…WHAT IF IT WERE YOUR DAUGHTER OR WIFE..IDIOT…
The little girl in the wheelchair says
“WILL I EVER WALK AGAIN MR.PRESIDENT?”
THE REPLY
“JESUS DUDN’T WANT YOU TO WALK HONEY”…
If ANYONE..and I mean ANYONE ever uttered those words to my daughter I’d be in jail!! Plain and simple!
I know it was a play on words but it is basically being said behind our backs…START FUNDING RESEARCH!!!!
Stacy and I are being interviewed by a local tv show next wednesday. I will use that as my opportunity to ask the Canadian Stem Cell Foundation for a job!
Very interesting information.
http://www.adultstemcellsrelease.com
CeeA …
I don’t know what to say – it hurts me so much.
I have here somewhere a recipe for a chocolate chip cookie that is so good … it has been used for FUND RAISERS. I will look for it tonight and send it off blog … if I find it. I am sure I entered it into my personal cook book. BIG HUGS to you all xxxxxxxxx
Me too, Cee-A and Beast. We feel like we know you and consider you our friends. We want so badly for all your plans to happen and help for Stacy. She is so lovely. God Bless.
Still looking … will find it!!!!!
What about a Book Sale? Everyone surely has books they can donate? Held at a Church or something?
Will any musicians donate their time to play at any of these events/sales? That always makes it fun. Any music schools around there? Maybe a High School Band, even a School Marching Band? Make it fun!!
Todays car wash…little late start..the streets were baren as people had family plans with our thanksgiving Sunday being today. Even so..we actually did our own van first thing…then a guy in a red pick donated $10 ..my good friend Cindy..took her truck around a muddy track and brought it over to give us a challenge and was our biggest donor yet of $40 accompanied with a kiss and hugg… LOVE YOU CINDY..she is a new friend I met last march when I was hired on with First Student school bus company..neither of us work there anymore yet she took the time to “muddy up” her truck for us… ( I think she just wanted to spin her wheels in the mud for fun ) and thought about OUR DAUGHTER and made the trip INTO town ..she is not around the corner.
I love to see the levels of compassion that each shows in their own way when they stop . Some say they are praying for Stacy while others show love on their face and don’t say much..
Little did my friend cindy know that a truck full of teen boys would pull up in WHITE CHEROKEE…covered in mud..Got a pic half way through the wash…SHOULD HAVE TAKEN A SHOT AT THE BEGINNING..IT WAS SOO SO DIRTY…
The driver couldn’t of been more then 19…said when they were done…NOW I WILL HAVE TO GO OUT AND MAKE IT DIRTY AGAIN..
eACH AND EVERY ONE IS DIFFERENT THAT STOP BY..diff walks of life..lifestyle and income…EACH GIVE ME A MEMORY OF THEIR OWN to reflect on when the buckets and the hoses and the signs are put away…
We had a couple that parked their van and told us they were going into shop at the brick …a rapper..who him and his wife were interested in talking about STEM CELLS…a guy with a bmw worth $100,000 that said he would like it if we would use his foam arerall on his tires and would make sure he would give us a good donation…HE DID IT HIMSELF..yet still donated $30..
IE = a guy from my work..i didn’t even know his name until yesterday when he showed up with a rental pick up truck…I met his wife who told me they had an accident on the highway at 3am less then 12 hours earlier..totalled their truck on a highway with a 100km limit.
He was said to have told his wife..I have to go to the car wash to help out a girl at work…he didn’t know my name either..
They took the time to make a difference in someone elses’ life when their own was in turmoil…
people like that renew my faith in humanity…and give me lasting memories of people that have no idea how they touched my heart! That’s what life is all about ♥
HEYYYY One step closer in the right direction CA & Beast! Thanks for the update on your car wash and the great stories from others who stopped by to meet your beautiful lady. Can’t wait to hear more updates.
Our kids school did a cookbook fundraiser too one time. A bingo & casino and a dance with auction like you’re already planning CA
Bless you all and especially Stacy. Here’s to her great siblings too, can’t forget what an important part they have in Stacy’s daily life. You’re all hero’s in my book.
A cook book…SOUNDS LIKE A GREAT IDEA! WHAT KIND? WHERE WOULD i TRY TO SELL IT? I LOVE THAT IDEA! HEART …GET BUSY..YOUR OUR COOK BOOK GIRL…WHAT SHOULD IT BE…SMART HEART TREATS? A MIX…OF TREATS AND AND SLOW COOKER IDEAS?
CeeA … I had a little same day surgery,thing,I’m so pleased the car wash was a success,I too will try to come up with some fundraiser ideas … as for the cookbook,WE can ALL send some favorite/family recipes via email,or however you want to do it,even a children’s section,ethnic section,ie:Polish,Italian,Russian,etc. a Holiday section, I have some ideas,but,need a day or two,to get my bearings back.
CeeA YOU KNOW YOU HAVE the BEST,MOST CREATIVE MINDS on the net,RIGHT HERE with our little FAMILY!
I wish we all lived closer,GREAT THINGS will come from these GREAT MINDS!
CeeA … Does Stacy scrapebook?? Maybe you and her can start a scrapebook,with ALL the wonderful memories from your first fundraiser(car wash)and keep adding,as you have more … It will be very touching to look back and see some comments and stories from people that donated and care.
Tell Stacy WE’VE ONLY JUST BEGUN! … A little girl named Emily picked Stacy’s name to pray for her at my church,so tell Stacy,she has a little angel named Emily,when I told Father Stacy’s story,he put her on the PERPETUAL PRAYER LIST. He was also very touched. Just wanted to let you know there’s a whole lot of prayers for Stacy here in Texas too.
PATTYCAKE has some great ideas!!!
The cookbook fundraiser sounds great. We could all contribute a few recipes? I think there are places that print personal cook books for families, etc.
While you HAVE THEM THERE at the Bingo – Dance a Cookie Sale? Book Sale too? That would be easy. People love books.
Wonder if Boy Scouts and Girl Scouts would like to make this a project for them and help? They would probably feel great – doing something so wonderful.
When will you do all this? People are in such a great loving mood around Christmas time, but are also broke, maybe especially in these times. When?
Here! Here! for STACY!!!
Heart YOU gave me the idea with your book sale
. It reminded me of other fundraising events I’ve participated in over the years. If we all did a tiny bit, Stacy will reach her goal in no time.
THEN She’ll be flying off to college making all those dreams come true. Feels good to be a part of a bigger picture outside of ourselves.
The plan is for July 2010…she will be attending college “dorm style” away from mommy
in August if all goes well with the fundraising..
I am not releasing the address widespread yet till I am finished, but have started a website http://www.hopeforstacy.ca drop in often I will be updating it frequently.
I wonder if some Churches have some ladies that knit or crochet? Could they make scarves, throws, mittens,and hats? Out here (I have to laugh!! It ISN’T cold here!), but the boys were these cute knitted hats, like multi-colored. Not always flashy colors, sometimes muted. Some women out here knit colorful socks too. Multi colors. Fun!!
Could they have a Stacy Knitting Club? They could meet at someones house, talk (you know girls LOVE that), and knit things for Stacy?
I wonder if any Knitting Shops would want to do that too?
http://cbs13.com/local/Sacramento.Stem.Cell.2.592882.html
More info about stem cell treatments, this one is about a boy being treated at Duke here in the states.
WOW….no doubt in my mind that child is thriving due to stem cell therapy…WAY TO GO DALLAS…WHAT A GIFT..truly inspiring.. ♥ Thanks OCEANS ♥
Trying to catch up… Just saw this. What wonderful idea’s. Stacy is beautiful. I’ll do some brain storming as well and post when I can.
I have some idea’s but they are mostly to use locally…. I don’t know if I should post them, or send them to sean via email. Please let me know. Thanks!
Any ideas are welcome! Thank you
Thank you Beast. I assume that means I can post away. I’m working on a list of idea’s and will hopefully have them together later this evening or sometime Monday.
CeeA … What about a Chinese Auction? GREAT fundraiser!
Businesses will donate things and Nursing home residents love to make things(crochet blankets)etc. and donate to help people,esp. kids and it makes them feel useful.
Pizza parlors donate pizzas,restaurants donate meals,food stores donate food baskets,businesses donate gift certs.ALL BUSINESSES,drugstores,hair salons,manicures.barber shops,pet stores,the possibilities are endless!
YOU can even donate an hour to “babysit”an elderly grandparent,so the parents can do holiday shopping
THAT’S the great thing about these auctions,you only put a ticket in the prize/service that will suit you! AND YOU don’t have to LAY OUT your OWN MONEY! It’s a win/win situation … WHAT A GREAT CAUSE,people will love to be a part of that,esp. around the holidays!
TRUST ME GO FOR IT!!
Here are a few idea’s.
If you can solicit local businesses to agree to donate 10% of their proceeds for a certain amount of time, say a day or group of days, with a ‘coupon’ either printed from your hope for stacy site, a church bulletin, or the local newspaper. I’ve seen this done for school fundraisers. Some business’s to solicit, and it would be GREAT to get a list of several, Oil Change places, 7-11, fast food and family style restaurants.
In addition to Terisa’s idea above, a variation, so to speak. A community ‘garage’ sale. Everyone donates items and all proceeds go to the fundraiser. I realize the weather isn’t ideal for an outdoor garage sale, but perhaps a church will allow space where they might have bingo or something similiar. (It might also help to have volunteers with vans or SUV’s willing to pick up larger items.) If you have a consignment or resale shop that pays for items, you may be able to make some additional money ’selling’ any left overs.
If you happen to know anyone with a snow plow, or snow blower, perhaps that might be an avenue to offer services for a donation, or even solicit businesses who offer those services to advertise on your hope for Stacy site, and offer 10% or a flat donation for those customers using their services who found them through your site. You can probably brain storm a variety of businesses within your community who can benefit from ‘advertising’ on the “hope for stacy site” by offering a percentage or donation to the cause. (brain storming off what we did for our real estate clients to keep in touch and continuously ask for referals.) This is a BIG plus for businesses, as you are offering them advertising, bringing them potential business.. and it offets their advertising cost so it’s a win-win situation. You can actually do it for almost any kind of business, whether they offer goods or services.
As I think of more, I will post them. Good luck! We are praying for you Stacy!
With regards to soliciting businesses for ‘advertising’ as I suggested above, perhaps your local church would be willing to include a flyer or add to their church bulletin the list, so the offer is not only available through the Hope for Stacy site. Also, you might ask the principal, or school admin, for the schools your children attend, if they would be willing to send a flyer home to include a list of businesses willing to participate. That will help get the word to more people.
Of course their is some leg work, to soliciting businesses, but it would be beneficial to them for the advertising.
hth… and still thinking of more idea’s.