We Remember

I'm veering away from a typical post this week because today, we remember Addi!

If you read my post last week about the Walk and Wheel for Mac Kids then you may recall I mentioned a little warrior named Addison who was fighting Acute Myeloid Leukemia and spent most of her journey at McMaster Children's Hospital.  Sadly, Addi lost that fight earlier this week.

Today is her memorial service!

So, today while I am still reaching out for donations to the Walk and Wheel, the charity of choice that Addi's parents have selected is C17.   "C17’s goal is to improve outcomes & quality of life for children with cancer & serious blood disorders in Canada. Currently, only 5% of donations to cancer research go to childhood cancer. Together we can help to grow that number, to save the lives of many other little warriors fighting their battles with childhood cancer in Canada."  

Circumstantially, I used to work for an organization that partnered with C17, so am aware of the good work that they do in the world of pediatric oncology in Canada.

So, if you know Addi or have followed her story, you've likely already donated because, how could you not?  But, if you haven't yet donated or if this is the first you've read about sweet Addison, check out her Facebook page and consider donating to this worthy cause in her name.  

"If you've seen the love that's in her eyes then everything is good, and if you know the way she felt inside, she's flying where she should.  I never believed we'd live to see an angel being born and flying home"  Flying Home - Chantal Kreviasuk 

Walk & Wheel for Mac Kids

This post might get a tiny bit lengthy, but it's a post that is SO close to my heart that I pray you'll stick it out until the end.

As most of you know, Neil and I lost our son Brady back in 2015 to a disorder called Urea Cycle Disorder.  And his particular form is called Ornithine Transcarbamylase deficiency.  We found out in 2016 that we were pregnant with another male with this same disorder and lost him as well.  So, considering all of this, we became very familiar with the disorder thanks to the genetics staff at McMaster Children's Hosptial, in particular Dr. Mariya Kozenko. Dr. Kozenko has been with us from the moment that Brady was transferred into Mac's care and is still our resource for all things genetic.

Our daughter Kyla, has also had her fair share of McMaster stays.  When she was first born, she was double checked for the same disorder as her brothers (she was tested as a wee embryo before IVF but this was a due diligence kind of test) and all checked out fine.  However, at 2 months and then again at almost 4 months (twice) she was hospitalized for a week at a time due to high fevers. It was determined that she has reflux in her ureter and the fevers were a symptom of repeated bladder infections.  She was prescribed an antibiotic (she's off it now) and currently sees the urologist Dr. Braga, who is equally as amazing as Dr. Kozenko, for regular checks on the state of her reflux.
Needless to say, we have been connected to McMaster Children's Hospital quite tightly since 2015.

Because of this, we ran a memorial golf tournament in honor of Brady, to raise money for McMaster Children's Hospital  for the past 3 years.  Last year, on the day of the tournament, was the day we had to rush Kyla to the hospital for her third stay because of a high fever.  So, following that and the stress it took to put on the tournament while caring for a small baby, it was enough for us to say, we need a break from hosting the fundraiser ourselves.  We were happy to be able to have a 3 year total of over $60.000.00 donated to the hospital in honor of our little guy and his name will now be on their donor wall forever!  That's the wall behind us in the photo.

Dr. Kozenko, Neil, Kyla, Nicole, Parker Neale (Hamilton Health Sciences Foundation)

3 year total donated by the Brady Fraser Memorial Golf Tournament

So, now that our fundraiser is not running (either for now or forever...we don't know yet) we decided to participate in a McMaster run fundraiser.  Our ties to Mac are so special and deep seeded that we never want to neglect that part of our story.  We simply didn't have the time or energy to devote to all the logistics of running a tournament ourselves.

This year, we have decided to participate in McMaster's Walk and Wheel.  A Foundation run fundraiser taking place on June 1st 2019 in Hamilton.  Neil, Myself, Kyla and our families will be walking in the Walk and Wheel this year in place of Brady's tournament.  And, we hope you will either join us, donate to our team or perhaps enter your own team.

I know many of my readers are local to the area so perhaps, you have had to stay at McMaster Children's Hospital in the past.  Or perhaps you are aware of little Addison Lawlor who is currently fighting like H*ll against Acute Myeloid Leukemia.  Addi is the sweetest little toddler who has had to endure a very arduous journey attempting to achieve remission status. I connect so deeply to her family and her horrific diagnosis.  Although Brady's was significantly different, children and families suffering... in hindsight, it's all the same pain.

So, if you connect with us personally, with Addi and her family or any family who has had to rely on Mac, please join us!  We would love the company and the support.  If you would like to donate to the cause, we would be so appreciative.  I've included the link to do both below.
You can also elect to sign up your own team and fund-raise in support of your own loved one.

Click the icon below to support Kyla in her "walk" for her brother or walk with us!!!

Thank you for your support,

Third Annual Brady Fraser Memorial Golf Tournament

It is now official that we are running the Third Annual Brady Fraser Memorial Golf Tournament!

This initiative is, obviously, so close to Neil and my heart.  Our son Brady passed away at 8 days old from this strange genetic disorder that we only know about and are able to monitor in future pregnancies because of McMaster Children's Hospital.  I always say that although we would have given anything to have the outcome be different with Brady, we both take so much solace in the fact that he was treated at Mac.  We know that everything that could have been done for him, was done. Literally, no stone was left un-turned. 

The golf tournament is our way of giving something back to the place and people that did their best for Brady and have guided us through this genetic mystery.  The proceeds from this tournament get split between the the genetics lab and the Pediatric Intensive Care Unit at McMaster Children's Hospital.  

In our first year, we had a goal of $5,000.00 to give back, and with the generous support and participation of so many wonderful people, we were able to blow that goal out of the water with a donation of $17,346.41.

Last year, we set up to try and beat our 2016 donation and get it up to $20,000.00.  We were not certain it would get there.  Human nature is for people to procrastinate.  And, that was generally the case.  Last minute registrations and donations were coming in.  Which, don't get me wrong, is all good and we're both so, so grateful for everyone that participated and generously donated time, money and in-kind items. My only point is that as you approach the registration deadline, and your still waiting on things...insert rapid heart rate and high blood pressure.  

In any case, with all of the early and last minute participation, donations on the day, extras that people showed up with, we were able to get just past that $20,000.00 goal with a cheque for $21,415.62.

This year, we're hoping to match the $20,000 goal from last year.  So, if you are interested in helping us reach that amazing goal, think about attending as either a golfer or for dinner only.  We are also always accepting monetary donations directly through the webiste (which goes directly to McMaster right off the bat - it never passes through our hands) and in-kind donations that are used in the raffle and for door prizes.  

The tournament is being held at Carlisle Golf and Country Club on Saturday June 23, 2018.  Come join the cause in whatever capacity that works for you.  Registration and monetary donations can be made here and if you are a small business or someone who wants to donate an in-kind item for the raffle, please reach out to me for a sponsorship package and we can arrange pick up or drop off.

We hope to see you all there!