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

Friday, 6 November 2015

Knowledge is Power

Mental tourture ...that is the only way I can explain the last two plus years of my life.
When Jack was first diagnosed in July of 2013, along with all the physical damage the disease would do to his body, we were told that 75% of boys with MPS II are cognitively (mentally) impacted by the disease. The odds were in favour that Jack would start regressing and loose his milestones, possibly not living past his early teens.
There was no quick test we could do to tell us if Jack's brain was going to be affected. The only thing we could do was to wait and see. We were told that "Jack would let us know".
And so, the torture of the waiting game started. If Jack forgot the name of something, if he stuttered while trying to explain something; if I caught him staring off into space, I would always be questioning is this the start of the decline? Was this the start of us losing our Jack?
Shortly after diagnosis, I was lucky enough to befriend another MPS II mom. She new my pain, as she had been in my shoes before. She told me of a study happening at the University of North Carolina (UNC). There they were monitoring the IQ of MPS II boys and some of them maybe screened into a trial where they are putting the enzyme these boys are missing straight into their brain thus stopping their mental decline. We would also be able to meet with a world renowned specialist on MPS II. Her son was lucky enough to get in the trial to receiving this new drug and is thriving.
It was a big decision and it scared the hell out of me, but as this mom told me "Not knowing was the torture and that knowledge is power". She was right and I knew that if this was my chance to save my son, then I would do whatever it takes.
So, for the past 2 years, every 3 months we have been travelling to UNC in Chapel Hill, N.C. USA for a total of 9 visits, that is 9 IQ tests Jack has done. Every trip has been long and stressful for us, but thank goodness for Jack it has been an awesome adventure.
Having to sit and watch your child take an IQ test is awful and then waiting for the phone call to know the results is just more agony. 
This past weekend was our last trip. The 2-year study is over and Jack's IQ has remained stable since the beginning. He did not need to be screened into the trial. We have been told that at the almost age of 6 years old with an average IQ, that it is very improbable for him to decline now. 
It is hard for me to find words to explain my thoughts or emotions but I feel as though I can now possibly stop waiting and maybe I can start to let go of this mental torture I have been putting myself through. Almost every night I sneak into his room, kiss him on the head and beg to whomever is listening to please save him. I doubt I will ever stop this ritual and I am sure this fear will always be with me, but I hope that I will no longer let it consume me. 
And as we close this chapter of our journey, we know all to well how many others await us, as this battle with MPS II is one we will continue to fight.

Saturday, 17 October 2015

Bandages Off!

Today was the big day! After wearing those bandages for a week, he finally got to take them off at his infusion today.
His resilience over the last 7 days just amazes me. The next day post operation there were no more complaints, he just adapted and moved forward.
But wow he was so happy after those bandages were off. When I asked him what he wanted to do that he had not been able to do, he quickly said "Ride my bike and go on the swings." Oh to see the world through the eyes of a child.
So let us adults remember that life is about adapting and moving forward.


Thumbs up! It was a good news kinda day for us. Jack's surgery was very successful and the doctor is very happy with the results. 
We also had his eyes examined while he was under and we were relieved to hear that his eyes are still stable.
We will be keeping him home all next week as he will have to keep his bandages and splints on for 7 days and they need to stay clean and dry. Which will be a challenge at home let alone if we sent him to school. 
His hands and wrists are also pretty restricted which is causing alot of frustration for him as he cannot do things by himself.
It will be a long 7 days for him and us but well worth the outcome.
Thank you all for the positive thoughts, prayers and well wishes.

Second Surgery of the Year

Our Jack is hopefully going in tomorrow for his 2nd surgery of the year, as long as this lingering cough he has doesn't prevent it from happening. Jack will be having Carpal tunnel release done on both wrists at Sick Kids.
Carpal tunnel syndrome is a common symptom most boys with MPS II have. Several of them will require multiple release surgery's in their lifetime. 
We are hoping for a successful surgery and speedy recovery and we appreciate lots of positive thoughts and prayers tomorrow for our Jack.
Hopefully we will be released in time to return home and have some Thanksgiving dinners with our loved ones as we will have much to be thankful for.
Here is a video taken today while Jack was getting his infusion. He loves to sing and how I cannot wait to hear him sing to me again after tomorrow is over.
Have a wonderful weekend and a Happy Thanksgiving!


A Busy Time

Many of you have been asking if we are doing another Fun Fair this year sadly the answer is no. As you may know Jack had surgery this summer to fix multiple hernias and in a few weeks Jack will be having double carpel tunnel surgery. Along with another trip to North Carolina in October we regrettably do not have the time or resources to do a big event but hopefully next year we will plan something spectacular.
Although we did not have a grand event we still worked very hard to do a bunch of fundraising for the MPS II Research Fund this year.
Last week my work, SGS Canada Inc – Lakefield Site, had a BBQ in support of our cause. We raised $1,500.00 towards research for a cure. Thanks to SGS for supplying all of the food and drinks and thanks to my amazing co-workers for all their hard work hosting the event and all those that came out to support it.
Between the BBQ and our Run for a Cure we have raised close to $14,000! Quite the achievement when you take into account we are fundraising to cure an extremely rare disease. And we owe all our thanks to our amazing supporters.
And while we are striving to raise money for a cure our friends are working to raise money to help us with the financial costs that comes along with having a child with a progressive disease.
Yesterday our friend Bill Young (William Young Drywall) hosted a tournament at the Quarry Golf Club in support of Jack and our family. Those that played were a lot of the tradesmen and friends that work with Bill Young, Ben (Jack’s dad) and my dad (Barry Harrison). It was a beautiful day for a game of golf and by the look and sound of it all those had fun.
We would like to thank Bill for his incredible compassion and bigheartedness in organizing this event, the proceeds of which are being applied to help with the cost of Jack’s new hearing aids. Bill is a very busy husband, father and business owner and we are very grateful that he wants to help our family. We would also like to thank those that helped Bill with the event especially his wonderful mother Patsy Young who ran the putting challenge the entire day and a big thanks to everyone who came out to play.
Kristin Higginson

The Tough Questions

That moment when you are tucking your 5yo child with a life limiting disease into bed and they decide to ask you about death.
"Mom does everyone die? Will you die? Will I die?"
Gulp...Hold back the tears...Say something... but what?
"Yes Jack everyone does die and nobody knows when. We cannot worry about it though, we just all need to love each other, be nice and kind and have lots of fun."
"Okay mom, can you get me more water now?"
And so the hard questions are starting with many more to come I am sure. I hope I can give him the right answers or at least not the the wrong ones.

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.