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

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!!!

Tuesday, 6 May 2014

Sponsor a Runner!!

The clock is ticking - only 19 days left!! And the Jack's Journey Joggers have been busy training (ahem!) for the big day!!

Please sponsor one of our amazing runners in the Ottawa Half Marathon on May 25th 2014.

Sponsor Jack's Aunt Courtney:
http://www.gifttool.com/athon/MyFundraisingPage?ID=2012&AID=2576&PID=413300

Sponsor Jack's Mom Kristin:
http://www.gifttool.com/athon/MyFundraisingPage?ID=2012&AID=2576&PID=413327

Sponsor Jack's Aunt Sarah:
http://www.gifttool.com/athon/MyFundraisingPage?ID=2012&AID=2576&PID=408287

Wednesday, 30 April 2014

25 days until the big run!!



Just 25 days until the Ottawa Marathon. Did you know that two of Jack's aunties and his momma have been busy training (some more than others, ahem!) to take part in the half marathon to raise MPS II research funds?

Please take a minute to stop by their fundraising page and support them.  It would mean so much to the Higginson/Harrison families!

http://www.gifttool.com/athon/OurTeamPage?ID=2012&AID=2576&TID=17396 

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