New Blog Changes
October 2020
We have exciting news. We would like to take this opportunity to announce that
We have exciting news. We would like to take this opportunity to announce that
A year ago today, a day I thought I would never be able to get through, our
Caught some special moments this week. Claire rocking her baby close to her.
Yesterday is a quiet day at our house, treatment takes alot our of the kids.
25 and 21 happened on a special day, Nana’s birthday!!
For my fellow caregivers/Batten parents. I have been struggling with comparing
We were so worried without her weekly therapy’s now that everything cancelled,
Our lives have changed so much during Covid and I know many parents can
#24 and #21 are complete. So much anxiety the week of treatment,
Today we wished this very special girl a Happy 5th Birthday. Covid put a damper
We all know that you might find Waldo before you find Marks hairline!
As you all know, Terri is always the one uploading posts. I think
Headed to Ottawa for two days, I was in a full room discussing rare disease and
Up early doing PT this morning, the infusions really give her that burst of
This memory popped up today, a reminder of when we didn’t have a care in the world,
Our little man is having a better day, isn’t feeling as anxious, didn’t need me
This just happened!!! We are honestly in shock, Claire’s school came together
Why it’s so important to bring awareness to Rare Diseases, and not just for Rare Disease Day.
Took awhile to heal from her g-tube surgery, but she is finally up
I hate treatment day soo much, it is stressful, it’s long, it makes Josef sick.
My little trouper! Her sweet classmates helped her make glasses to celebrate the
We just knew something wasn’t right, and for the first time in 9 months Claire
We have such an incredible support system at Claire’s school.
For the past 16 years there has been a conference held in Orlando
In December of last year, we were approached by a stranger
We were so disheartened to hear about another diagnosis.
It’s been a hard week, and when I think of the 20+ appointment
Not where we want to be on a Friday night, when we just left 48 hours ago.
We arrived at Sick Kids for a four day surgery stay.
10 years ago I answered a roommates ad on craigslist and the rest is history.
We decided to get dressed up and hit up a hot spot with my Sister and her family for New Years Eve.
Christmas was mentally exhausting. I’m sure most moms can agree with that.
Can’t believe we have been doing this for nine months. We get to start the week with treatment
That smile, even with what she must face everyday. She is so brave.
We spent nine months fighting for a diagnosis, and I thought that it was a lifetime.
Thank you to Make A Wish for giving us tickets to Glow Toronto
Sometimes memories take your breath away……Our first Christmas after diagnoses is not something we are looking forward to.
After another visit to urgent care last night, this picture my sister sent me is an accurate picture of how I am feeling.
We were honored to be chosen as this year’s charity at The Realty Boutique’s Annual Holiday Skate.
We are really struggling with this cold. Claire is on three types of seizure meds
Almost wasn’t sure this treatment was ago. The hospital has a protocol to not administer the enzyme unless
I have been spending a lot of time researching the best therapies for our kids to keep their kids strong and moving.
Its been a whirlwind, so I took the weekend and had a minibreak for my birthday.
We are not far from being a year into this diagnosis, and sometimes that feels like a lifetime and sometimes
I attended the Canadian Organization for Rare Disease Innovation to Technology conference, it
We were lucky enough to be picked to attend the Santa Clause Parade with Make A Wish.
Vaughan mother wants world to know about rare disease that’s making her child suffer multiple
We are in Chicago attending a Battens Research Conference. This is our first one, and
Now that our lives revolve around treatment, we jumped off a plane, got a little sleep
I can go on and on about the incredible time we time we had on our MAW trip. It was just what we needed,
There must be something about a sparkly gym floor that makes you want to move, because that’s what happened to Claire.
We are so excited to know that this time next week we will be in Orlando at Give Kids the World, enjoying some much-needed downtime.
Even though we haven’t experienced our Make A Wish trip yet, we have been able to enjoy many of the perks of the organization,
Sometimes small mistakes can make for very long days! Once we check into the hospital at 8:00am
We had such a great run, 7 weeks of Claire gaining strength, saying more words and being in a great mood.
So this just happened! My little man is in preschool and I just dropped my little girl off at Junior Kindergarten.
Thankful for my amazing In-laws! Claire was sick with a pretty bad virus and after two days in the hospital with her,
We took Claire to her new classroom yesterday to meet her Junior Kindergarten teacher and make sure her
For the past week and a half, we have been staying up north at the cottage. The kids have been playing in the sand everyday,
Today was a big day…..for the first time we brought both kids for treatment at the same time. It takes both of us to keep
With the help of my Mother-In-Law, we hoped on a plane and headed to Columbus Ohio to see the leading Battens Specialists.
Every year the Battens Organization in the US holds a conference for all the families affected by Battens disease.
Claire was lucky enough to get picked to participate in the Honda Indy Family Day with Make A Wish.
Infusion #5 is done. Hasn’t become any easier, it’s such a stressful procedure that needs to be done just right.
We did it! First fusion was successful. Josef is the youngest in Canada to ever be treated for CLN2 and one of the few in world
When you are dealing with a neurodegenerative disease, its so important to do everything you can to
Infusion #4 done! This one didn’t go quite as smoothly ☹️, a combination of Claire moving, and the needle not being
There is something so incredibly hard bringing a perfectly healthy kid to a hospital. Josef went into neurosurgery to
Infusion #3 done! I know it’s too soon to start seeing results, but I swear we are starting to see the sparkle in her eye that we
Both Claire and Josef light up whenever they see a cat, they have been wanting one for some time. The only problem is Mark
Happy 2nd Birthday Josef. The last year has brought so many changes, you went from crawling to running and climbing
Infusion #2 was a success! Can’t say enough about the nurse and doctors at the Hospital for Sick Kids, they make sure they
Today was an amazing day, Claire started horse therapy. First time on a horse and she did it for 45 minutes.
We made history this week, first infusion is in the books! The night before Mark and I could barely sleep,