I wanted to address something that I have been thinking for a while:
Why a foundation and not a fundraiser ?
Fundraisers have by definition a set target, a set amount being raised. This works great in situations where you know what your costs are in advance to whatever it is you are trying to do: Buy equipment, pay for costs associated with an unexpected expense, things like that. A perfect example would be to pay for an accessibility ramp. You can get quotes from vendors, determine the total cost and set that as your target.
Our journey with Noah started very early, as most of you know. We were fortunate to live in a country like Canada, where his Cancer treatment was covered by the government. We really did not have to worry about the cost of treatment at all, so it was one less thing on our minds.
As Noah got better from the cancer, we naturally started thinking of the next challenge: his paralysis. It was a very fluid first few months and we did have access to government-sponsored treatment for 1 year after injury, at Holland Bloorview. And we took full advantage of that. We also were encouraged by his gains, however small they may have appeared from the outside we were cheering him on with every new little movement we saw, like his biggest fans.
And then, one year passed, and that support ended. This was January of 2017
It is extremely discouraging and frustrating as a parent to see your child making gains and realizing that you cannot access that level of care anymore. It was unacceptable to us.
We (well, Ivona mostly) didn’t waste any time and as the clock ticked away we got busy looking for charitable options. This is how we found Shriners Hospital for Children, in Chicago, a place that Noah has been going to since April of 2017. It is a great facility that is dedicated to treating children with various types of spinal cord injuries. The only problem is we are limited to going there for only 2-3 weeks every 5 months, which is just not intense enough based on all research studies done on recovery for SCI (Spinal Cord Injury) patients. So we had to look for more options.
We found Frazier Institute in Kentucky, Louisville and heard about all the research being done there for paediatric SCI patients. We decided on a whim to go there back in January of 2018 for a week of assessment, and that’s when we got “hooked”: The equipment, the expertise and the level of knowledge they have is simply a step above anything else we had seen! And the level of assessment performed by them was also incredible: So much detail and insights that we had no idea about him. We needed more. Except Frazier was extremely expensive for us as private patients: To the tune of $35,000 – $45,000USD for 60 sessions, or around $500-700/hour. This was unfeasible.
And so the search continued…
In the past couple of months we found 2 other private facilities, one in Florida and one in Boston that we heard from other parents were very good, professional and caring. And more financially accessible.
This is why we can’t have a set fundraising target; there is no set cost, no quote we can get from a vendor; there is no set number of sessions that a medical professional can say: “This is how many you need / can do before there are no more improvements”. There are patients who after several years have seen improvements to their condition. We don’t know what the ceiling is for recovery, so we will keep fighting to provide Noah what he needs. All we know is what we know today:
- Noah is young; this is the time where he benefits most from cell plasticity (young spinal cord, still in development).
- Noah continues to see improvements from physiotherapy, and as long as he does, we will not stop.
We will continue to provide him access to these treatments as long as we are financially able to and, without mom working and needing to be there with him for many weeks of the year (trust me, Ivona has more than a full time job!), we are strained on a single income. And this is why your help is so important, and why this website is a foundation, not a fundraiser.
I hope I explained myself well but if you have any questions, comments or suggestions, please use the contact-us page and we will answer every comment.
Thank you for taking the time to read, and please share our story with others; it means a lot to us.