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,
