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

Monday, 14 September 2015

Grade 1

First day of Grade 1 was "AWESOME!" and everyone liked his new hearing aids

"Mom did you hear that noise"

"Mom did you hear that noise" Jack says to me with a big smile on his face and his eyes as big as saucers.
Introducing the new and hearing improved Jack Higginson!
With MPS II being a progressive disease and hearing impairment a common issue, we knew the chances of Jack having a hearing loss was very probable. Since diagnosis we have been closely monitoring Jack's hearing and over the summer got confirmation that there is a mild hearing loss. 
We picked up his hearing aids yesterday afternoon and so far so good. He is very content with wearing them and has only once complained about them.
It makes me so happy to watch him experience an improved quality of hearing. He knows he can hear better with them and I think that makes this change easier for all of us although I realize it is still very early.
Now that we have the hearing aids we are officially ready for Jack to start Grade 1. He is really looking forward to it as am I however with some anxiety, as I know kids at this age start noticing differences with their peers. As any parent does, I dread the day that Jack comes home feeling alienated. So I please ask all parents with school aged children reading this to remind your kids that whether someone is shorter or taller, has freckles or dimples, wears glasses or hearing aids, we are all different and accepting differences means treating everyone with respect and understanding. It really does start with us!
Thanks for your continued support.

Goodbye Summer

Hard to believe today is the last day of August! Summer always seems to go by so quickly especially with 2 busy boys. Instead of spending money on a vacation we opted to have a staycation this year so we could enjoy our little piece of country paradise. We are lucky enough to have a pool so the boys turned into fish this summer. The new sandbox their dad built them also got a ton of use however i think it needs a refill as all the sand is now in my house. With all the friend and family bbqs, beach trips, PTBO zoo trips, boat rides and bonfires it is not a wonder summer goes by in the blink of an eye.
We also continued with our quarterly trips to North Carolina and we are so grateful that Jack's IQ scores continue to remain stable. Physically he is also doing very well however this week he will be starting to sport a new accessory...hearing aids to assist with the mild hearing loss that has occurred because of the disease.
It will be a change for all of us but a change for the better!
Stay tuned for another update soon.

She's Moving Home!!

Jack is recovering well although definitely moving slower than usually. It's amazing how resilient he is and its a wonderful thing because just like every Friday we needed to make our weekly trip to PRHC so Jack can get his ERT infusion (Enzyme Replacement Therapy).
We were lucky enough to have a very special visitor, Jack's Auntie Court, stop by with some snacks and some laughs. 
Her visits are becoming more frequent as her and her family have relocated back to Peterborough recently. 
She loves Jack like he was her own and she has been a pillar of strength for us since we started this journey.

Surgery Update

Well our superhero did great! Jack's surgery went textbook and there were no complications. 
We are so lucky to have a world class hospital like Sick Kids so close to us. Their incredible doctors and nurses provide the most excellent care and always go above and beyond their professional duties.
Thank you for all your prayers and well wishes. They helped give us the strength we needed to stay positive and have faith that Jack would come through today as the fighter he is.

School's Out For The Summer....

.....and Jack is a Kindergarten graduate! Our summer fun has been in full swing and although we have had an amazing week already we are preparing ourselves for some major downtime as Jack is scheduled to have surgery this Wednesday July 8 at Sick Kids. Jack will be having an inguinal (groin) and an umbilical hernia repaired. Hernias are a common symptom of MPS II. Before diagnosis Jack already had an inguinal hernia repaired and an umbilical hernia repaired at PRHC.
The anesthetic risk of MPS patients is considered high for many reasons due to possible airway abnormalities and cardiac involvement just to name a few.
Jack has so far had no major complications with anesthetic (I hope I don't regret typing that!) so we are hoping he comes through this as the superhero that he is.
Jack is very aware that next week he is having his groin hernia fixed and he is not concerned about it. I almost think he is looking forward to it. Being the busy boy that he is I can only imagine how uncomfortable it must be for him.
It is hard to believe that in the 5 ½ years of our Jack's life, he has already had 6 surgery's, with sometimes multiple procedures being done at once to avoid going under anesthetic again.
In the fall of this year Jack will also be having carpel tunnel release surgery as testing reveled he has severe carpel tunnel syndrome, yet another common symptom of his diagnosis.
All though we have been through many surgeries, it never gets any easier. My anxiety runs high thinking about next week as I know my husband and I will be holding our breaths as we sit in that waiting room. Staring like zombies at the patient status screen, anticipating the words 'In Recovery' to appear beside Jack's name. Then we wait, hearts pounding, for the doctor to come and tell us the 'news'. My legs literally go numb just remembering how these types of days go. I cannot wait to hold him in my arms as he comes to and tell him how much I love him.
So may I please ask all of you to keep Jack in your thoughts this coming Wednesday? The more prayers and positive vibes sent our way the better!
Hopefully he makes a speedy recovery so we can enjoy the rest of the summer and make some fantastic memories.
Thank you,

2015 Run For A Cure Results

The 2015 Run for a Cure – Ottawa Race is now over and we raised an amazing $12,483.75 that will go directly to research for a cure for MPS II.
Thank you so much to all who sponsored our runners. Fundraising for a rare progressive disease can be challenging, but we were totally blown away by the amount of support we received.
This fundraiser would not have been such a success if it wasn't for Jack’s Journey Joggers team members. People, who dedicated their time, mind and body to run a race and help us surpass our fundraising goal!
We would like to thank all who joined our team this year from the bottom of our hearts!
To our loving family and friends, who have given us their support since the beginning, we love you. Thank you for standing by our side and always offering to help us in any way possible!
- Sarah Higginson
- Lee Higginson
- Courtney and Patrick Redmond
- Lisa McConkey
- Dawn Pogue
- Jacob Miller
- Courntey Miller
- Krista O'Donnell
- Kristal Ashford
To the friends of our family members, who love them and therefore want to help us, some of whom have never even met Jack before. I hope you know what caring and compassionate friends you truly are. They are lucky to have you in their lives. Thank you!
- Caroline Urbach
- Erin Croteau
- Pamela & Jeff Culligan
- Phil Russell
- Haylee McCloskey
And finally to Jack’s P.O.P girls at PRHC - they are not just our nurses, they are our friends. They see firsthand what Jack goes through on a weekly basis at his infusions. We are so grateful that they are a part of our lives and that they love our Jack so much. Thank you!
- Haley Nyboer
- Sarah Van Huizen
- Ellie Moroney
For any of you out there who are looking for a challenge, like participating in a half marathon (21km), 10 km or 5 km race, we are recruiting for next year! I promise you that it will be the experience of a lifetime and you will have no regrets having participated. Ask anyone of our team members, the feeling you have when you are running that race and when you cross that finish line is unforgettable!
With gratitude,
Kristin Higginson

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