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

Thursday, 16 April 2015

Run for a Cure - Ottawa - 2015

Hi Everyone,

For those of you that don’t know me personally, my name is Kristin Higginson and I am the mother of two beautiful little boys, Jack and Owen.
On July 2nd, 2013, my life, as I knew it was changed forever. We were told that my oldest son, Jack was suffering from a rare progressive disease called MPS II, also known as “Hunter Syndrome”.

Needless to say, I felt shattered and for a time, I went to a very dark place. For several weeks I was totally depressed and spent my days on the couch mourning the life I had envisioned for Jack, until one day when I gave myself the choice to either keep lying there or to get up, push forward and fight.
Well, I chose to fight and one of the many ways that I am fighting is by doing everything I can to put much needed funds into the hands of the researchers, who are currently working on finding a cure for this disease that has been waging war with my son and me! 

On May 24th, I will be running 21km in the Ottawa Half Marathon for my son Jack and I hope that I can count on your support by pledging myself or one of my amazing team members in this race.
As this disease is extremely rare and virtually unknown, fundraising is left up to small family run foundations and to the parents and families of these affected children.

Please know that 100% of your pledge will go directly to the MPS II Research Fund (managed by the Isaac Foundation) to support research into finding a cure.

I will never, ever stop fighting for my son and I am asking for your support by making a pledge by clicking on the below link. I will be forever grateful for your kind generosity.

With my sincerest thanks,
Kristin Higginson

Click Here to Pledge Us

Friday, 27 February 2015

Rare Disease Day 2015


Tomorrow is Rare Disease Day.  The main objective of this day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

As you know our Jack has an extremely rare disease called MPS II or Hunter Syndrome so we would love it if you would show your support by sharing this post or making this your profile picture for the day.

Here are a few statistics and facts to illustrate the extensiveness of the rare disease problem worldwide.
  • There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day
  • 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population
  • Rare disease impact more people than aids and cancer combined.
  • In the United States, a condition is considered “rare” it affects fewer than 200,000 persons combined in a particular rare disease group.
  • Approximately 50% of the people affected by rare diseases are children
  • 30% of children with rare disease will not live to see their 5th birthday
The political momentum resulting from Rare Disease Day also serves advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.
If you can believe it in Canada right now, only 60% of treatments for rare disorders make it into this country and most get approved up to six years later than in the USA and Europe. People with rare disorders in Canada are missing out on treatments that could save or significantly improve their lives. This needs to change!
The solution is for Canada to create an Orphan Drug Regulatory Framework. The United States and most countries in Europe have already created one, but Canada is lagging behind.  The Canadian framework will allow drug companies to apply to bring their treatments to Canada at the same time as the USA and Europe.  It will also create an opportunity for Canadians to participate in clinical trials at the same time as they happen in the rest of the world.  

As always thank you for your support.
The Higginson Family

Thursday, 4 December 2014

Happy 5th Birthday Jack

Today we celebrate all that is Jack.  That high energy, fun loving, caring little boy, who never ceases to amaze us all.  This morning I wished him a "Happy Birthday" and told him he was now 5.  He responded, "No, not yet Mom, I don't want to be 5 yet.  1, 2, 3 and 4 were fun.  I want to stay 4".  I laughed and explained to him how turning 5 means that he can do more things because he is a bigger boy now.  Since our talk, his negotiation for everything today is "I am 5.  Can I stay up late?  I am 5 now".

We had a big birthday celebration for Jack this past Saturday.  Jack had his first 'school friends' birthday party, along with some of his cousins.  13 kids made for a whole lot of fun and chaos, but when Jack announced that "This is the best birthday party ever", I declared victory!

November was a very busy month for us.  We travelled to the University of North Carolina once again, as we do every 3 months for the MPS II Natural History Study, which Jack is enrolled in.  This trip marked our 1-year anniversary of participating in the study.  We were thrilled that Jack's IQ score is remaining consistent and we are hopeful that these results will continue.  Right now, Jack is your typical 5-year old kid, who enjoys going to school, playing with his friends, learning to swim and skate, as well as being a great big brother to Owen.

We love you more than you will ever know Jack and we are so proud of you.

Jack on his 5th Birthday December 4th
Crazy Birthday Fun @ Trent

Cupcakes for Everyone

Jack at the North Carolina Botanical Garden

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:

Diane Hutchison or Don Routley at 705-295-1959

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!


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.


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.


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


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.


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!


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!