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

Wednesday, 19 March 2014

Little sir's sleep study

A few weeks ago, Jack had the adventure of spending a night in the sleep lab at Sick Kids Hospital.

Many children with MPS II have breathing problems.  Sometimes they snore or choke at night and can stop breathing (sleep apnea).  If you've ever slept within 5km of our man, then you know he is a great snorer.  So, to track his breathing and check if he needs help breathing at night from a machine like a CPAP, or, to have his tonsils/adenoids removed, his doctors arranged a sleep study.

Kristin and Jack headed to the big city and went to Sick Kids for an afternoon appointment at the sleep clinic.  They then had the afternoon off so they took in the amazing Ripley's aquarium!  It was amazing, but maybe our little dude isn't cut out for a career in marine biology, as Kristin explained:

I loved it and would go back again so I could actually look at some fish. Jack was not so interested in them. He was more taken with the playground and the huge water table.
Still, it looks like a pretty cool place!  Here's jack in one of the tunnels where you are surrounded by fish:

Jack at the  new aquarium in Toronto - look out for sharks!

After a fun afternoon and dinner, it was time to head back to the hospital to get settled for a night of sleep (hopefully!?).  Jack had some monitors attached to his head chest and head and then once he fell asleep he had more wires attached.  What a trooper!  Luckily, he slept like a champ!  (Mommy, on a narrow bench in the same room, not so much!)

Here's our lil' man, cutting some zzz's during the sleep study:

Digger/bulldozer pyjamas are essential to any good sleep study!

And here is 'Dr. Owen' performing his own sleep analysis on Jackwhile playing in a super-fun blanket fort at Granny & Poppa's house.  Wouldn't you like to crawl in there with them for a snooze?  I'm sure it wouldn't be too loud or crazy!!


Owen:  'Now where do I attach the probe?!!'

This test, along with all of the other ones Jack has had since July, are a hassle and can be hard to explain to a kid.  But, they provide great information that will help make Jack's journey with MPS II easier and better.  Thanks as always to the great team at Sick Kids for the amazing work they do!




Tuesday, 18 March 2014

Running just as fast as we can....

It has to be said that Jack's family is not known for their athletic prowess. YET, many of them have signed up for the CRAZY task of running between 10 and 21k to raise money for research into a cure for MPS II. While running such a long distance seems completely insane, we can't think of any better reason to lace up the runners and hit the road.

 The Ottawa Race Weekend takes place May 25-26th. It includes six events over the weekend, including a 5k, 10k, Half-Marathon and Full Marathon. Organizers expect that more than 48,000 runners will take part. Wow! Amongst those 48,000 runners will be three of Jack's aunts, two of his uncles and his very own amazing momma Kristin! YAY!

Photo: This is happening right now! 21 km's aren't going to run themselves. Thanks to those who have sponsored me so far and to those of you who will. Help us bring hope and a cure for MPS II. Your donation and support give so much motivation! Please visit the link below and support my main man on this journey! 
http://www.gifttool.com/athon/MyFundraisingPage?ID=2012&AID=2576&PID=413300
Jack's Auntie Courtney is already hard at work training for the half-marathon in May!

You can donate to the 'Jack's Journey Joggers' by visiting their fundraising page here:
http://www.gifttool.com/athon/OurTeamPage?ID=2012&AID=2576&TID=17396

Your support would be most appreciated and will help encourage our 'athletes' to tackle those long kilometres (rather than trying to flag down a bus to the finish line!).

All of the races for this year's Ottawa Race Weekend are full, but there is a section of the website where you can register for spaces as other runners drop out (called the Bib Market).  If you'd like to join the team, check it out here:  http://www.runottawa.ca/weekend/bib-market

The money raised by this amazing gang will go to the MPS II Research Fund, a registered charity which funds research into a CURE for this disease.  We are all so proud to contribute to this fund, which gives us so much hope for Jack's future and that of the other children living with MPS-related diseases.

If you live in the Ottawa area, please circle May 25th and 26th on your calendar and join a whole bunch of crazy Higginsons in the cheering section!  I'm sure we'll also be planning some fun lunch/dinner/brunch get-togethers that weekend and we'd love it if you could join us.  And, stay tuned for updates while the team trains their feeble muscles in preparation for the big day!!

Monday, 17 March 2014

Feeling the love for Jack and his family!

It's time for another list of thank-you's for the amazing people who continue to show their love and support to Jack and his family.

Words are not enough to express our thanks to:

- A donor from Lakefield who wishes to remain anonymous who donated a large sum to Ben and Kristin to help cover some expenses.  Thank you!

- Our friend Laura from Hot Yoga Peterborough who continues to raise money for Jack's Journey.  Thank you Laura!  You've been supporting us from the beginning of this journey and we appreciate it so much!!  If you are looking for an amazing Yoga Studio in Peterborough, please check them out!! 

And, did you know that there is a whole contingent of Cornwall people who have been sending their love and support to Jack?  Belated but most appreciative thanks go out to:

- Cathy Markell who held a bottle drive to raise money for Jack's Journey

- The Cornwall office of the Ministry of the Environment who held a charity lunch in honour of Jack.  Thank you so much!!


Your love and support means a lot to Jack and his family, especially on a day like they had a few weeks ago.  To summarize, the morning included a trip back from Toronto where Jack had an overnight visit to Sick Kids, little Owen falling and cutting his forehead, Ben's truck breaking down on the way to the emergency room, and finally the whole family meeting up at PRHC for Jack's enzyme treatment and so Owen could have the cut in his head glued shut!  WOW.  There's never a dull moment for any parents with two young wild and crazy boys but these cuties seem to take it to a whole new level for their poor mom and dad!!

Here are the two dudes at PRHC on that busy day, having some lovely brother bonding time!  Brotherly love soothes all wounds, doesn't it!?




Jack kissing Owen's ouchie all better!

Two cool dudes eating onion rings

Mr Blue Eyes, making a full recovery after having a cut on his head glued shut in the ER!

Our handsome man lining up his trucks and cars in the window
at PRHC while having his enzyme replacement therapy



Burpees for our boy!

Do you know what a burpee is?  It's a crazy squat, pushup, jump move, or, "a full body exercise used in strength training and as an aerobic exercise".  They are not easy, and they are not fun!  And, a crazy Crossfit club in Pickering has committed to doing 1,000 burpees next Sunday March 23rd to raise money/awareness for Jack and MPS II.  

How incredible is that?  You need to check out Crossfit Courage on their website or on Facebook.  And, watch the video made by the club's owner, Brian Nugent (former professional football player and all-round great and enthusiastic guy!) on YouTube at: https://www.youtube.com/watch?v=Xcfx37rsQWE

Jack and a bunch of his family members will be there to cheer for these amazing and generous athletes.  And, a team from Peterborough's Kawartha Crossfit is going too, to lend their support.  

Thanks to Crossfit Courage and Brian for choosing to support Jack - and for your kindness!  We're looking forward to a fun day on Sunday!!  (How many burpees do you think Jack will do!?!).

You can find out more about the 1,000 Burpee Challenge on the event page on Facebook!  Hope to see you there!

1,000 Burpee Challenge 
Saturday March 23rd, from 12-3pm
Crossfit Courage
1885 Clements Rd. Pickering, Ontario, L1W 3V4 unit 241 & 242
(905) 428-2826


CrossFit Courage

Monday, 3 March 2014

Some fun in the sun for our favourite family

Our favourite family was able to get away for a few days in the sun last month.  It's hard for Ben and Kristin to take time off work when they've missed so many days this year, and taking a holiday also means juggling Jack's ERT treatment days.  But, Ben's big sisters have been known to be bossy and after much pestering, they managed to convince Ben and Kristin to tag along on their annual holiday at the last minute!  After the stress, anxiety, and worry of the past year, we can all imagine how much they needed a break!

They flew to Tampa and had a day there at the Lowry Park Zoo - Jack loved seeing all the animals, and of course, playing with his crazy cousins.

Captain Jack at the Lowry Park Zoo

From there, they drove south to take a water taxi over to Little Gasparilla Island.  This little barrier island is only 7 miles long and has no roads, cars, or stores.  It's a tiny piece of paradise.  They stayed there for 4 nights of crazy family dinners, fun on the beach, and lots of laughter (and a few beers!).  Dare we hope that Ben and Kristin actually relaxed for a few minutes?!  A good time was had by all, and with 15 assorted family members there it truly was a trip to remember.

15 Assorted Higginsons take over the beach!

It means a lot to all of us to see Jack making these wonderful memories with his mom, dad, and baby brother.  Though the warmth (and Ben's sunburn) have faded away, we'll always have the pictures to remember this very special time!  And we are definitely already dreaming of next year!


Fun in the sun with baby brother Owie

Crazy cousins!

Fireworks on the beach - making memories!!


Ben and Kristin... enjoying some quiet time and maybe relaxing!!!
Fun for the whole family - Ben and Owen
This sand isn't going to dig itself!!

Tuesday, 18 February 2014

Plenty of fun at PRHC

Considering the weather so far this winter, Ben and Kristin are extremely grateful that Jack is now receiving his ERT (Enzyme Replacement Therapy) at the Peterborough Regional Health Centre.  This eliminates the stressful weekly drive to Toronto and allows them to take turns being with Jack at the hospital.

It also means that friends and family can come and visit and help entertain the little man during his multi-hour infusions.  His treatment days are usually Fridays and he's in the pediatric outpatients until from 9:30 until about 2pm.

Checking out the great view from his room with Grandma 

Older cousin Charley spends some quality time with our big boy and Auntie Lee.

So, feel free to swing by to visit our boy.  Starbucks delivery optional!!

Some overdue Thank-yous!

Things have been quiet on the Jack's Journey blog the last little while but that doesn't mean that it's been quiet behind the scenes.  Many wonderful people have kept on with their amazing gestures of kindness and support.  Thanks are overdue for these kind supporters:
  • Nicole & Mike Conroy for organizing a bottle drive to raise money for Jack/ MPS II Research
  • Mike Mattuci and everyone at Lockside Trading Company for their fundraising efforts over Christmas
  • Candi Wilson, iCandi Photos, for donating her time to take the Chrismtas pictures at Lockside
  • Tompkins Jewellers for donating the proceeds from watch battery sales for October
  • The Welsh family for supporting Jack via  the Adrian Welsh Memorial Hockey Tournament
  • Flannagans Butcher in Lakefield for organizing a Beard-growing contest (we need some pictures of this one, I think!!)
There are many more thanks to come, so please don't feel offended if we have missed you.  Your kindness and generosity continues to overwhelm us all.   It was been just over 7-months since Jack was diagnosed with MPS II and it has been the kindness and love shown by the community that has helped the family get through this time.  Thank you.

Big thanks from this big guy and his family to all
of the friends and neighbours who have supported
Jack's Journey and MPS II Research.  

February 28th is World Rare Disease Day!

Did you know that February 28th is World Rare Disease Day?

World Rare Disease Day is an annual observance held on the last day of February (February 28th or February 29th in a Leap Year) to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families.

Did you know that there are 7,000 rare diseases and that 80% of them are caused by genes?  And while a single rare disease many not affect many people, more than 350 million people around the world suffer from some form or rare disease.

We've all been on a steep learning curve, navigating the world of rare genetic diseases. Jack's disease, Hunter Syndrome or MPS II, affects only 2,000 people worldwide.  Please feel free to help raise awareness about rare diseases - they almost always lack money for reseach and public education - by sharing this photo of our man on your Facebook profile.  To learn more about rare diseases and the global genes project, please visit www.globalgenes.org.



Thursday, 2 January 2014

Travelin' man

Jack, Ben and Kristin visited Chapel Hill, North Carolina for 5 days in December.  Jack has been accepted into an observational study that is researching how MPS II affects children.  So, this means that our fave little dude will travel down to North Carolina every couple of months to be monitored.  This study does not include treatment, it's only monitoring the effects of MPS II.  The knowledge researchers gain will help in developing new treatments (and someday, a cure, we hope!) by providing a better understanding of the disease.  To learn more about the trial you can visit this MPS Society webpage:  http://www.mpssociety.org/posts/news/mps-ii-neurodevelopmental-observational-study/

The doctor who is leading the study is one of the world's leading experts on MPS diseases, Dr. Joseph Muenzer.  He's an amazing man, and he met with Jack, Ben and Kristin and gave them a lot of information about the disease and Jack's health.  Their visit included multiple tests to establish a 'baseline' so that they can track the effects of the disease over time.  Our Jacko man was a super-champ and really impressed the researchers.  As far as they can tell, his cognitive abilities have not been affected so far.  This is great news as it means Jack's brain has not been harmed by the disease.  In some cases, there is not brain involvement with MPS II, though doctors don't understand why it does affect the brain in some children and not others.  Getting the news that Jack's brain seemed unaffected was just about the very best Christmas present the Higgy/Harrisons could have possibly hoped for!

They had a good trip, and as Kristin said, they tried to make it a fun adventure for Jack, who got to go on an airplane for the first time!  As you can imagine, he was VERY excited!  And, bad weather and some flight delays gave him lots and lots of extra time to play with the escalators and moving sidewalks at the airports - every kid's dream, right!??

Take-off!  Our big boy on the flight to NC!

They made time for fun including going to the movies and getting milkshakes!  Woot!

Looks quite a bit warmer in North Carolina than it is in Buckhorn!
Despite the very successful trip, they were glad to get home and get back into their routine.  And of course to collect baby Owen, who was well cared for while they were away by his grandpa, Karen and Granny & Poppa!  That boy sure does get a lot of love!!  They had back to UNC in March and I'm sure it will be another fun adventure for our main man!

Monday, 30 December 2013

Peterborough!!

Starting on December 13th Jack had his first Enzyme Replacement Therapy (ERT) in Peterborough!  Yahooooooooooooo!


This was amazing for Ben and Kristin.  No crazy winter driving to Sick Kids!  No being gone for 14-hour days!  No more waking up crazy early to get there!  No fighting Toronto traffic!  As you can imagine, this is a huge stress relief for Ben and Kristin.  As Kristin said:

Awesome day at PRHC.   The nurses are AMAZING.  Jack did not fuss at all for meds or port access.  He was in a great mood.  Maybe not sitting in a car for 2nd hrs in the early am helps with that.

They will still have to travel to Sick Kids often for appointments with Jack's other specialists, and for regular follow-ups with this MPS II team, but, this option of having the ERT treatments closer to home will make a huge and positive improvement to the quality of life of Ben, Kristin, Jack and Owen.  This also means that friends and family can pop by the hospital on treatment days to allow Ben and Kristin to get lunch and take a break, and to help keep Jack entertained.  If you'd like to stop by, feel free to contact Ben or Kristin to set it up, or, if you find yourself in Peterborough with some time to spare please stop by to say 'hi'.  His treatment days are Fridays and he's usually there from 9:30am until about 2pm - 6th Floor in the pediatrics outpatient clinic, room 35.

Here are some pics from his past few Peterborough treatments:


Admiring the view from his treatment room at PRHC

Jack and his constant companion on treatment days:  the iPad!

Making himself right at home for Peterborough treatments

Now that the treatments are close to home, visitors like Granny and Poppa
can stop by to give B&K a break and to visit with Jack (and read some quality
children's literature to him too!)