It has been one month since our last update. Our lives have changed dramatically. 

Just four weeks ago, Alyssa came home from school suspecting she had scoliosis like her best friend. After examining Hillary out of caution, an urgent x-ray would reveal the same diagnosis for Hillary. Adolescent Idiopathic Scoliosis. 

We are headed to Montreal tomorrow for out-of province care since we simply can’t wait for Ottawa to help Hillary. It will cost us ten thousand dollars. I am trying to desperately to respect Alyssa’s privacy while still sharing Hillary’s story publicly — which she wants to continue to do, very much. 

CBC Journalist Jennifer La Grassa expertly described the Scoliosis landscape in Ottawa in 2023, and I can personally affirm it is still the exact same. The barriers she outlined could not be more accurately described. I’d like to thank her personally. She really drilled down to where we ended up exactly. 

We’d also be lost without the guiding light of the family before us, Alyssa’s friend. If it wasn’t for them, advocating — and then assuring us it was nothing we did — we would have thought that we caused this with our prolonged isolation. 

They saved our family from such irreparable despair. 

Instead, our girls are happy. Relieved. 

Well informed and very grateful to be receiving care. 

The doctors have assured us that these cases are all growth spurt related. That there is no hematological connection. That early intervention is the best a parent can ever hope for. 

I was counting on the solar eclipse to bring miraculous healing to our girls, and it sure delivered. Instead of waiting three months to be seen, CHEO called us with a cancellation on the day of the eclipse to see an Orthopedic Surgeon. We packed a picnic with Moon Pies and Sun Chips and went right from CHEO to the path of totality. It was so very beautiful — Hillary cried. 

We requested an urgent consult with Dr. Derek Lee in Toronto, a chiropractor and father who couldn’t wait for CHEO four years ago to help his 14 year old son and so proceeded to Virginia, USA for orthopedic bracing and to the Shriners Hospital in Philadelphia for free less-invasive non-fusion spinal surgery. He has done all of the research we have been desperate to do ourselves and has been a tremendous resource to us already.

I’ve applied for a consultation with the Shriners Hospital — a hospital based on masonic principles who specialize in childhood scoliosis. 

Based on Dr. Lee’s thorough knowledge, we requested a second consult with Orthopedic Surgeon Dr. Smit (mentioned in the CBC article) who is one of only two surgeons in Ontario performing the aforementioned less invasive tethering surgery. We must now decide which surgeon to proceed with for fusion surgery based on their waitlist and experience.   

They ordered MRIs to rule out any neurological issues and it has us a bit worried. The waitlist for the MRI is several months, but we’ve been told that we could proceed to a private one, if we so choose. I’ve found a place who can help us this month, but we need a new private referral from CHEO which will take weeks. 

We are constantly in a state of confusion. 

Getting Hillary to be seen in Orthopedics was much more difficult. Because we caught her so early and her degree of curvature is under 20 degrees, the CHEO Body Shop triaged her for five-months-out for her first assessment. I pleaded with Hematology to help expedite the referral based on the probability of disorder progression and the likelihood of relapse but nothing was getting through. 

There was no way I was waiting. 

Every passing day, Hillary’s risk for spinal surgery increases.

Early intervention with bracing prevents the need for spinal surgery. 

These are well known, documented facts.

Hillary was counting on me. 

I wrote to the Head of Orthopedic Surgery and proceeded through the new Patient Experience process (complaint department) with CHEO to help navigate the issue, citing UN Resolution 76/132: Addressing the challenges of persons living with rare disorders. The representative I dealt (over several days) with was one of the best professionals I’ve ever worked with. Hillary was seen by a surgeon on Friday to confirm exactly what we suspected. 

She needs immediate orthopedic bracing. 

We were granted the prescription but despite getting an early x-ray, an early diagnosis, AND an early meeting with the surgeon, we must wait several months to get into the bracing clinic at the Ottawa Rehab Centre. Rules are rules and there are no exceptions for little girls with rare disorders who need bone marrow transplants.

I booked an appointment in June but then we must wait another four weeks after that to receive the brace, so Hillary is looking at several months of disorder progression, putting her in the surgery risk category. 

We just can’t let it happen. 

After calling every Orthotist in Ontario to find an earlier appointment with no luck, I desperately reached out to Action Ortho Sante in Montreal who makes all of the pediatric scoliosis braces for patients of the Shriners Hospital in Montreal. The owner was THE most knowledgeable expert I’ve spoken to thus far and I knew immediately he was the one. The expert Hillary deserves. 

He is fitting us in at lunch on Tuesday as a courtesy. It’s the best gift I’ll ever get on my birthday. 

Because the care is out-of-province, it is not covered. We need two braces per child — one daytime and one nighttime. We’ve borrowed more from the bank and are looking for overnight accommodations and we will take the girls to the BioDome after and we will have fun in one of our most loved Canadian cities. 

Making the best investment of their lives. 

Wearing the prescription braces will be difficult, but both girls are adamant on giving it all they’ve got. The braces, in combination with the physical therapy, can stop the curve progression. It can’t correct what has been done, but it stops it from getting worse. 

Some do, however, indeed achieve reduction in curvature, eliminating the need for surgery. 

Andrea Lebel did. She’s an internationally-renowned Physiotherapist right here in Ottawa who is trained in the Schroth method of rehabilitation for Scoliosis. She has been our most important point of contact thus far. We’ve taken both girls in for warm-up training exercises and will proceed with virtual classes twice a week, with one hour a day of physio at home with me — seven days a week. The exercises are tailored specifically for the girls’ curvatures, and are pretty intense. 

We will also ensure the girls get frequent massages, but the waitlists are long for those who specialize in scoliosis. In one month of consultations, I’ve already used up our full year of physio benefits coverage, on both of our government plans.

I’ve converted our basement to an exercise studio and I’m trading my masonry gloves and mitre saw for lululemon pants and a water bottle. I’m in excellent shape both mentally and physically with seemingly endless endurance — I feel up for the challenge if everything else will just cooperate. 

Like keeping my day job somehow.

And not catching COVID. 

And being able to access care for these kids. 

Our family has a plan. 

With orthopedic bracing and intense physiotherapy, we plan to (at the very least) maintain Alyssa’s curvature and prevent progression to reduce the number of vertebrae they must fuse during surgery, to help preserve mobility. If we can reduce her curvate, perhaps she can qualify for tethering surgery instead. This cannot be promised, but we do believe in miracles. 

We will work very hard on Hillary’s disorder progression. 

She won’t do well with this bracing. She had a distended abdomen. Poor circulation. Frequent skin infections. Major heat stress while just sitting. This will be a very arduous next two years for Hillary but she has no choice but to succeed. I’m so very grateful to have put in the pool. 

I will fight for her life. 

I don’t know how to navigate this. I really don’t. I am squeamish. The thought of spinal surgery is just chilling my core. When I wake up in the morning, I honestly can’t believe what I’m facing.

But, these kids. They are so innocent. 

And full of joy. 

They have not shed a tear over this, at all. We have come together and are stronger than ever. 

Hillary is totally committed to averting surgery. She was quite insistent that we proceed to Montreal, offering to pay for the rest of her life for what she needed to survive. I’m glad she spoke up. 

These kids. They need to know it’s going to be okay. That it’s nothing they did. That the hard work will pay off. That there is no shame in being tall and beautiful — and needing help with it.

That there is hope for their future. 

I take on the challenge with power. I stand confidently before the girls and assure them we are going to fix it. And we’re going to have fun doing it. 

I don’t know where it’s coming from but it’s not from me. There is only one set of footprints in the sand right now. I am in total shock. 

Off to Montreal we go. 

#StartWithHillary