Jessika's Fundraising Page

Updated 25th August 2022
But most content on here is over 10 years old... see below for the new facebook group

Pre post:

A link on cure SMA Canada to the Quebec facebook group for SMA :

 http://curesma.ca/quebec/index.htm

Hi everyone, there is a great Facebook group we created for Jessika it has photos, videos and recent day to day week to week info that is not updated here.

She will still have this web site "Jessika's fund", Since this is static with equipment, permanent links and documents.

We have the one and only donation button on this site. please spread the word and lets get as many Friends and Family on the Facebook group.

For more information please visit and become a member of Jessika's Facebook page: https://www.facebook.com/groups/386615074706657/

(Membership to her group is not mandatory to view the group)

Jessika Wynter Annastasia Parry is a 12 year old with SMA type 1 (Spinal muscular atrophy)

She was given a life expectancy of 2 years old when she was diagnosed at the age of 7 months.

We are providing care for her at home with one parent staying with her, and support with nursing care provided by the CLSC (local clinic). Our nurses don't usually change from month to month, and one had been with us 2 days a week for 2 1/2 yrs. Sometimes we find ourselves in between nurses .. but not often.

We just had another nurse doing all 4 days for about 9 months...

We are WINNING the fight to keep Jessika healthy and with a good quality of life. mostly due to our protocol or anyone coming in to our home being healthy and following 3 rules.

1. sanitize or wash (for 20 seconds with soap out of the water) your hands upon entry and before touching Jessika if you have to, and if you don't have to touch her DONT.

2. wear a blue mask (provided new).

3. don't ever cough or sneeze towards Jessika or in front of a fan or air blower facing Jessika. Also best to cough/sneeze in to elbow and not hands or in the air on to all our stuff inc Jessika's toys and feeding equip. Or to try go in to a different room/outside in summer to do so still respecting the elbow and limiting spread of things from inside your body.. healthy or not.

These keep Jessika alive and out of hospital.. trust us.. we know what we are talking about :-)

WE funded the "Magic arms"

Its called WREX wilmington robotic exoskeleton. 

For more information please visit and become a member of Jessika's Facebook page: 

ALL NEW CONTENT IS HERE:  

https://www.facebook.com/groups/386615074706657/

(Membership to her group is not mandatory to view the group)

And see our thanks to donors tab here >>>>> as always for donations received towards every aspect of Jessika's care.

Jessika and her nurse Marie-Pier.

March 2013 in her room, She is getting so big :-) 3ft 4" and 19kg

Taken 18th September 2012 in her room. 

Welcome to Jessika's web site

to help her survive until a cure can be found.

If you want to see the mid 20's woman with SMA type 1.. the link is here and also near the bottom of this page..

http://www.caringbridge.org/visit/mjpurk

FB Jessika Parry's (SMA Type 1) friends and family page =

http://www.facebook.com/groups/386615074706657/

The groups is Closed so only members can post, so as long as you have a Facebook account you will be able to join. 

By the way her donation button is HERE VVVVVV :-)
And furthur down the page also.

“We make a living by what we get, but we make a life by what we give.”- Sir Winston Churchill

The paypal portal is in Can dollars, below is a link to online conversion before you donate. A great big Thanks from Jessika and her family.

http://www.xe.com/ucc/

“A simple child, that lightly draws its breath, And feels its life in every limb, What should it know of death?” – William Wordsworth, 1798

See "News-blog" on the right of the screen for older updates we copy them over to there when we clean up.  :-)

Thank you everyone for my fundraisers and for donating here on my site.

 My parents and I will never forget the love you all have shown.

 Info:

We looked into how we can set up Jessika's fund as a non profit charity so we can give receipts for donations for your taxes but its not possible, the best way would be to have it donated through a church that can give tax reciepts and pass the funds on to Jessika.

Another Donate button HERE VVVVVVV :-)

 And one at the bottom of the page. 

If anyone can doubt that a SMA type 1 affected baby can survive and live a quality life, we have met a ten yr old with the same type as Jessika who is doing well. There are many other children we know of  who have fought and beat the odds with the help and dedication of a loving family and friends. And with NIV (non invasive care), new technology and a changing face of teatment they are surpassing exspectations as your reading this.

Here is one web site for much much more info on one mid 20'S woman with the same as Jessika http://www.caringbridge.org/visit/mjpurk

We cannot stress enough that although Jessika has SMA Type 1 she is one of the strongest 10%; some type 1 babies don’t make it out of the womb or need support from day one. We had no idea until jessika was 7 months old that she even had this disease due to her developing normally in every way except leg movement to crawl and roll over. She has two copies of the backup gene SMN2 which can produce a small amount of protein(30%) needed for muscle development, due to the missing SMN1 gene this will not be enough to prevent a quick loss  of her abilities to breathe and swallow to accompany her decline in leg, arm and head movement. But with a medication possibly 1yr away and discovering that with proactive care following the NIV protocol(the machines and procedures we hope to acquire) she can survive for a few years past the 17 month death sentence she was given.  Our hope is for a cure or partial cure to reach her in time; With your help, love and generous donations we can really make a difference in her tiny life and who knows what miracles may be possible.

 For more info on Jessika

 Please go to her Facebook group and you can also See the "What is SMA" page on the right and also the "NEWS" page for information on machines needed for Jessika and the costs. This site is set up to help us to pay for extra expenses required due to jessika's illness (SMA type1). Check out all the pages to see current photos and fundraising events and thanks to our donors. Any and all monnies collected will go towards helping support Jessika in the hopes of sustaining her life at a great quality while we await a cure for this terrible genetic disease (they say possibly a medication in a year). We know that the main difference between children that make it past the age of 2yrs and the ones that don't is Proactive care which includes use of special machines, love and the support of everyone around us.

Monies raised will go to help for equipment and costs for Jessika and to help support our family at this time.

Please see the Donation button below.

Please see our Thanks to donors page for details

“We make a living by what we get, but we make a life by what we give.”- Sir Winston Churchill

The paypal portal is in Can dollars, below is a link to online conversion before you donate. A great big Thanks from Jessika and her family.

http://www.xe.com/ucc/

“A simple child, that lightly draws its breath, And feels its life in every limb, What should it know of death?” – William Wordsworth, 1798