“To get through the hardest journey we need take only one step at a time, but we must keep on stepping.”

Friday, 14 November 2014

'Tis The Season...

Christmas is fast approaching and we wanted to let you to know about some fundraising events and promotions that are coming up in which proceeds will be generously donated to the MPS II Research Fund in support of our boy Jack.

Santa at Lockside


With Christmas just around the corner, a lot of families will be looking to get their children's picture taken with Santa.  Instead of going to the mall, why not come out to Lockside Trading Company in Young's Point on either Sunday, November 30th or Sunday, December 7th from 11 am - 4 pm.

Once again, our friends at Lockside have invited Santa to come out and take pictures with the kids. For a minimum donation of $10 (per child) you will get several pictures emailed to you.  All proceeds will go to the MPS II Research Fund in support of Jack and our quest for a cure.  Don't forget to brings your letters for Santa.

Save the Dates



Last years Christmas Picture at Lockside.  Can you tell Owen just loved Santa!

Ward Street Gallery - Signed Limited Edition Prints by Debi Fitzgerald


Looking for a special gift and wanting to support a good cause with your purchase?
Our friends at Ward Street Gallery are selling some beautiful Debi Fitzgerald prints and donating a portion of the proceeds to the MPS II Research Fund in support of Jack.
See below for more details and contact information:

http://www.wardstreetgallery.weebly.net/
Diane Hutchison or Don Routley at 705-295-1959
don.routley@nexicom.net







Our sincerest thanks to Mike Mattucci and Lockside Trading Company, Dianne Hutchison and Don Routley for their continued support and generosity.






Tuesday, 7 October 2014

What an Incredible Day!

Jack’s Family Fun Fair was a huge success once again this year!  We raised over to $21,000 with all donations going towards research for a cure for MPS II.

I think it is safe to say that everyone, who attended left with a smile on their face and a ton of wonderful memories.  I know that for me, seeing the children’s faces when they got to meet their favourite Princesses or Superhero’s made my heart swell and then to see the faces of those children’s parents or grandparents made me remember that is the little things in life that mean the most.  It is a memory that I will hold on to forever...

To Our Community:
I have said it before and I will say it again, we are so lucky to live in a community that looks after their own.  Since Jack was diagnosed last year, the outpouring of support has been so overwhelming.  I hope everyone that came out on Saturday left with a ton of great memories for years to come and that you thoroughly enjoyed yourselves.  We are so very grateful for your support!

To Our Sponsors and Donators:
Again, thank you to our amazing sponsors and to all who donated to our event. 
We had lots of great prizes donated for our Raffle and Silent Auction.  Thank you to those businesses and individuals, who so generously donated to the Fun Fair.
And thank you to everyone, who donated all those tasty treats for  “Jack’s Sweet Treats”.  These goodies were a hit with everyone!
A special thanks to Glen Caradus for performing at ‘Sing Song Time’. http://paddlingpuppeteers.com/

To Our Volunteers:
Our sincerest thanks and gratitude to all of our Fun Fair volunteers!  It is because of you that the day was such a huge success.  Your hard work and amazing attitudes ensured that the day ran smoothly and that everyone, who attended left with a wonderful family experience.
A special thanks to our ‘Princesses’ and ‘Superhero’s’ for taking the time to say “Hello” and to pose for a picture with every child, who was so thrilled to meet them.  You did an incredible job!

To The Ring Leaders:
A huge THANK YOU to my amazing and loving sister, Courtney Redmond!  The Fun Fair would never have been the huge success it was without her hard work, determination and tireless efforts – not to mention her love and dedication to Jack.
Courtney is a leader, who make things happen and that is exactly what she did over the past several months in planning every aspect of the day.  She loves my boys, like they are her own and she will do whatever it takes find a cure for Jack.  I would not be where I am today without her.  She makes me keep fighting!
Thank you to Courtney’s right hand, my wonderful mom, Bev Harrison.  She worked tirelessly on making this event happen.  She is the most loving and supportive mother a daughter could ask for.
And to my friends, Tina Dummitt and Erika McImoyle (Courtney’s left hands)...Thank you so much for your help and support.  You are ‘key parts’ in my support system and I hope you know how much I appreciate you.


Go Team HOPE!

Sincerely,

Kristin Higginson

Jack meeting his favorite super hero Batman

Jack and Owen visiting the animals

Elsa and Anna our amazing princesses

Courtney - Jack's Aunt, dunking her sister

Jack's mom Kristin getting dunked


Friday, 3 October 2014

Jack's Family Fun Fair - Our Amazing Sponsors


We are so very grateful to have these amazing businesses, individuals and families help us by sponsoring the fun activities being held tomorrow.  We are so lucky to live in such a wonderful community that looks out for one another.

Activity Sponsors


The Worboy-Kidd Family - Crafty Corner
Salon Sorella - Princess Tea Party
Judi Coyle Re/Max Sales Representative - Pumpkin Painting
Nash Manufacturing Ltd. - Hockey Shootout
FreeFlo Physiotherapy - Petting Zoo
Harrison Drywall Contracting - Dunk Tank
Terry's Gas and Variety - Bouncy Castle
Waymac Farms - Superhero Meet and Greet

Event Sponsor 


Shire Pharmaceuticals 


A special thanks to Flannigan's Butcher Shop for donating all the meat for the BBQ again this year and also to Mark Anderson and Jessie Scriver of The Island Grill for donating the condiments and buns.

Our sincerest thanks goes out to all of you and we are hoping to raise lots of funds tomorrow in support of research into a cure for MPS II.

See you tomorrow!

Love & thanks,

Ben, Kristin, Jack and Owen















Monday, 29 September 2014

Jack's Family Fun Fair - See You There!

Don't Forget.....

Jack's Family Fun Fair is taking place this Saturday October 4th from 11am - 4pm.
We are so excited to see our wonderful community come together to raise money for a cure for a rare disease called MPS II - Hunter's Syndrome all while having a ton of fun and making amazing memories with your family.


So Much Fun to be Had

For a reminder of the day's activities and special event times click here.

Not just for the kids


While there are a ton of fun things for the children to do we also have a ton of great prizes for adults to check out in our Country Raffle and Silent Auction.
Many generous individuals and businesses have donated to our event including again, our lovely cousins Joe and Julie Soukenik (Chas. S. Rivchun & Sons Jewelers).



This piece is created by Carelle, a designer out of New York.  It has a 4.88 ct round blue topaz (Jack's birthstone) surrounded by .12 ct diamonds.  It's on a 18" yellow gold cable chain.  It is valued at $700.00.  We have decided to include this necklace in our Country Raffle so that everyone has a chance to win this gorgeous necklace if they choose to! 

If you are still considering making a donation to either the silent auction or country raffle there is still lots of time. Please contact Courtney Redmond theredmondfamily@hotmail.ca


Rain or Shine

We are hopeful the weather will be beautiful Saturday but if not we want to let everyone know that all events are in doors except the Dunk tank. The petting zoo, bouncy castles, princess tea party and super hero meet and greet will all be taking place in various buildings throughout the day.  So don't let a bit of rain keep you away.

Parking

There will be overflow parking at the north lot of the Buckhorn Community Center and we will have a shuttle bus available.

It is going to be a great day!!




Saturday, 20 September 2014

Jack's Family Fun Fair - The Countdown Is On!

The 2nd Annual Jack's Family Fun Fair is right around the corner and we're busy finalizing all of the details so that you and your family will enjoy the day, all while helping us raise some much needed funds for research! Bring your family to the BUCKHORN COMMUNITY CENTRE on October 4th and enjoy all the amazing activities at the 2nd Annual Jack's Family Fun Fair. 

We have some special times to make note of so be sure to read below and come prepared to have an absolute TON of FUN! (And leave with very tuckered out little ones!) 

11:00 : Doors Open and the fun starts! 
11:15 : Interactive Performance by singer and child entertainer Glen Caradus!
12:30 : Fire Trucks Arrive!
1:30: Princess Tea Party and Superhero Meet and Greet:

Why not join us for our very special Princess Tea Party and Superhero Meet and Greet from 1:30 - 2:30! Has anyone heard of FROZEN? :) Meet Queen Elsa, Princess Anna, as well as Cinderella and Snow White. Not to mention your favourite Superhero's including Spiderman, Batman, Ironman and Superman. Also, please keep a keen eye out for Olaf the snowman from FROZEN, we hear he thinks its still summer in Buckhorn! :) Also, be sure to wear, or bring your little ones favourite superhero or princess costume for even more fun! And make it memorable with pictures and a signed autograph from one or  all of our Princesses or Superhero's!






Meet Queen Elsa, Princess Anna and Olaf from FROZEN!


Enjoy a cup of 'tea' with Cinderella and Snow White. 




Practice your best Superhero moves with Batman, Spiderman, Superman and Ironman!

Throughout the day we will also have:
- Face Painting
- Bouncy Castles
- Dunk Tank (Various times throughout the Fun Fair!)
- Petting Zoo (Critter Visits)
- Crafty Corner 
- Jack's Sweet Treats
- Hockey Shoot Out
- Pumpkin Painting
- Kiddie Corner
- Fire Trucks (12:30 arrival)
- Silent Auction and Raffle
- BBQ with meats from Flannigan's Butcher Shop in Lakefield
- Games and More!


Tickets can be purchased from Kristin Higginson, Harley Marshall, Tina Dummitt or the Thirsty Loon, and Erika McIlmoyle in advance or just get them at the door!


We sincerely hope to see you all on October 4th. We've got a lot of hard work to do to find a cure for MPS II - Hunter Syndrome, but that doesn't mean that we can't have fun along the journey!
xoxo Jack's Journey Fun Fair Committee!






Friday, 22 August 2014

Jack's 2nd Annual Family Fun Fair

Mark your Calendar

We are happy to announce that Jack's 2nd Annual Family Fun Fair is being held on Saturday October 4th, 2014 at the Buckhorn Community Centre.

Thanks to everyone last year's Fun Fair was a huge success in bringing our community together in support of our Jack and MPS II Research and this year we are going to do it again.  All proceeds will be going to the Isaac Foundation's - MPS II Research Fund.  Together with your help we can create more awareness about MPS II - Hunter's Syndrome and raise funds for research to find a cure.

We will be having some great new activities this year, including a Petting Zoo, Princess Tea Party and Superhero Meet n' Greet.  We will also have some fun activities from last year, including the dunk tank, bouncy castles, crafts, sweet treats, silent auction and raffle.

Donations

We are seeking donations for the silent auction and raffle, so if you or your company would like to donate a prize, please contact Tina Dummitt at gingerdummitt@gmail.com or Courtney Redmond at theredmondfamily@hotmail.ca

We are also excited to announce our first silent auction donation from the talented Jenny Kastner, who has generously donated a piece of her artwork to be auction off.  To check out the Portfolio of this amazing artist go to www.jennykastner.com

Sponsors

This year we are also offering sponsorships for the following our Fun Fair Activities:

♥ Face Painting  ♥ 2 Bouncy Castles ♥ Crafty Corner ♥ Princess Tea Party ♥ Superhero Meet & Greet ♥ Pumpkin Painting ♥ Hockey Shoot-out & Assorted Games ♥ Kiddies Corner ♥ Petting Zoo ♥ Jack’s Sweet Treats ♥ Barbeque ♥ And More!

We are pleased to announce that our first Activity sponsor,  Harrison Drywall Contracting will be sponsoring the Dunk Tank and we have also nominated the Owner (Jack's Grampa) to be one of the dunkees!  

If you or your company is interested in sponsoring an Activity, please contact Courtney Redmond at theredmondfamily@hotmail.ca for more information.

Volunteers 

We are also looking for volunteers to help out at the Fun Fair, so if you are able to volunteer an hour of your time,  please contact Courtney Redmond theredmondfamily@hotmail.ca for more details.
Also, to all of you high school students or parents of students, this is a great way to get some volunteer hours!

We want to take this opportunity to thank all of you in advance because without your help and generosity, this great event would not be possible.

Thank once again and we hope to see you on October 4th!




Friday, 1 August 2014

How Far We Have Come.....

It is hard to believe it was only a year ago that our lives were turned upside down.  I was stuck on my couch depressed and mourning my son.  The crazy part was my son was still alive. It was the life I wanted him to have that I was mourning, the life that I thought was going to be taken away from him.  

I am not sure how long exactly I stayed on that couch for but thanks to my family, friends, and our new found MPS families I did get up.

The past year has been a roller coaster for sure.  Weekly trips to Toronto to go to doctor appointment after doctor appointment and have all sorts of tests run to determine how far the disease has progressed.  Surgery’s, MRI’s, ERT’s (Enzyme Replacement Therapy). It was chaotic and heartbreaking.  Having to hold your crying child as they are being poked and prodded is one of the worst feelings ever.   

Jack has been a rock star through it all and seems to take it in stride.  His patience and resilience continues to surprise and inspire me.   

He seems healthier now than he has ever been since being on Elaprase, the synthetic enzyme. We have been getting his infusions at the Peterborough Regional Healthcare Centre every Friday since December.   Some day’s he fights getting his port accessed and other days he sits there with little fear and watches the needle go in. 

We are still enrolled in the Natural History Study at the University of North Carolina where Jack goes for cognitive testing every 3 months.  He is doing remarkable and his IQ continues to be average or above.  We still have high hopes that MPS will not take its hold on Jack’s brain.  We continue to see him develop.  He is learning how to read and showers every night pretty much by himself (shampooing his hair and all).

Although we know MPS has presented itself throughout his body, physically Jack is to be doing well.  We continue to go to Sick Kids to visit our rounds of Cardiologists, Ophthalmologists, and Otolaryngologists.  Hearing a doctor tell you that there has been ‘No Change’ are some the best words the parent of a child with MPS II can hear. Our last big trip was in June when Jack had his tonsils and adenoids removed, ear tubes inserted and a bronchoscopy completed.  It was a very rough recovery but the results were very successful.  His hearing has improved, he seems less congested and he no longer rattles the house with his snoring.

So as life continues on and we continue on this journey, I try to explain to people that it is not that life has gotten easier, it is that we have lived in this new life for so long now that it has become our new normal.

I remember talking to another MPS mom shortly after diagnosis and telling her I don’t know how we are going to ever be happy again.  She told me that right now it seems that way but "life will be beautiful again".  And she was right, life is beautiful.  More beautiful now that is has ever been.  I no longer mourn the life I wanted Jack to have because he is living life right now.  And for each and every one of us there is no guarantee of tomorrow, only right now.   Life is full of so many uncertainties. So give your loved ones a hug, stop worrying about the little things and get out there and live!

Kristin


A few pictures of our summer vacation at a cottage in Cloyne.

Such a handsome boy

Beach Babe
Jack towing brother Owen and cousin Rory

Hello Brother!

Friday, 6 June 2014

A heartfelt updtate

Kristin recently wrote a beautiful heartfelt update for our friend Simon's iBellieve's website.  Here's an excerpt:

I have tried to sit down and write something about how our family is dealing with the challenges of Jack’s diagnosis and MPS II.
I struggle to put it into words. It has only been 7 months since we discovered that Jack has this disease. We have done all the medical baselines to find out what toll MPS II has taken on him in the short 4 years of his life. We are now on a new journey and trying to find our way.


You can check out Simon's website and read the full article by clicking here.

http://ibellieve.com/stories/kristin-higginson-mother-jack/?utm_source=iBellieve+Newsletter&utm_campaign=d894285102-June_Newsletter5_28_2014&utm_medium=email&utm_term=0_fef4598ed7-d894285102-109202437

Thursday, 29 May 2014

Oh what a run!!

Team 'Jack's Journey' after the run
(missing is 'Uncle' Phil, who rocked the full marathon!)
Auntie Court, the big guy, and Mom post-race!
Finish line for Kristin and Aunt Sarah
Three awesome MPS boys - Jasper, Isaac and Jack


Just a few pictures from last Sunday's Ottawa Half-Marathon (with more to come soon!).

It was an amazing day and our team raised more than $10,000 for MPS II research!  WOW!
Thanks to everyone who donated and supported the runners - it was really incredible to feel the 
outpouring of love from everyone!  Thank you thank you thank you!!

The Isaac Foundation is soon issuing another research grant for $50,000.  This is mostly due to all of the love and support that all of Jack's friends have sent in via donations, the Fun Fair, and other fundraising events.  

We will never give up hope to find a cure!!  

Tuesday, 27 May 2014

First soccer game of the spring!

Future World Cup star!!
Mad skills!!
Look at these pictures of Jack!! Future soccer star in the making for sure!! World Cup, here we come!!!