Let the fundraising begin!

It’s been a busy and exciting week! Last week we announced our exciting news of James being accepted for a life-changing surgery called SDR. If you haven’t read that post yet, check it out here.

We have done a lot of preparation and research in what our projected costs are for our journey ahead. We’ve spoken with many parents who have also travelled to St. Louis with their families for SDR and fundraised to get there. We’re so thankful for them! Here are our projected costs:

As our budget shows, we are applying for out of country coverage by OHIP (Ontario Health Insurance Plan) which may cover as much as $30,000 CAD from what we’ve been told. There is great inconsistency with who gets approved or not (based on the families we have been connecting with).

We have started a GoFundMe page which you can visit here to help us on our journey. Be sure to look to the bottom of the write up where you can also find an option for a tax receipt if you prefer. Stay tuned for fundraising events.

It definitely feels real now! It’s with a humble and grateful heart that we ask for your help to get James this life-changing surgery and intensive rehabilitation to prepare and follow the surgery. Thanks as always for reading!

Selective Dorsal Rhizotomy (SDR)

Dr. T.S Park

Hi to our loyal followers! Thank you for following along in our journey with James Michael. The winding trail has taken another turn which we are so grateful for – SDR acceptance in St. Louis, Missouri! Soon after James was diagnosed with spastic diplegia cerebral palsy at 13 months, I (Ali) got connected with support groups on Facebook. First, I joined the Grandview online parent support group (Grandview is our local children’s treatment centre). I quickly asked the group of over 850 parents if any were familiar with groups specifically for parents of kids with CP. The same day I was added to “CP Warriors”, a parent support group & my friend Jen (creator of the CP Warrior group) also added me to two SDR groups – one for St. Louis Children’s Hospital and an Ontario SDR group. Just like that, my network expanded drastically and I have gotten to know so many caring and knowledgeable people. They know the journey of having a child with CP, many of whom have been to St. Louis for SDR and have made significant gains by having the surgery. These groups and people have been an incredible resource since October 2017 when we were new to figuring out the many therapies to go to and then of course, applying for SDR.

We feel incredibly blessed that we have known about SDR as a major life changing option for James not long after his diagnosis. I have followed blogs of many of the CP warriors that I got to know and we knew that we wanted this for James early on (see Madi’s blog here, Evie’s blog here, and Cruz’s blog here). In one of our many therapy hangouts, my friend Jen (her son, J.R had SDR not long after he was 2 – the youngest in Ontario!), encouraged me to apply for SDR as soon as James was 2 (the earliest you can apply). We weren’t sure what the “right” time to apply was (many doctors we spoke to in the GTA knew little to nothing about this surgery, so we were the “experts”) but she told me, if James isn’t ready for it, Dr. Park (SDR surgeon in St Louis) will let you know what to work on to make him qualify. That was the best advice! I’m so glad we applied right when James was 2 (August 1) because it turned out that James needed an updated MRI which delayed our completed application. Fast forward to Monday, January 14 and James is accepted for SDR!

So what is SDR? SDR is a spinal surgery that involves sectioning (cutting) some of the sensory nerve fibers that come from the muscles and enter the spinal cord. Two groups of nerve roots leave the spinal cord and lie in the spinal canal. The ventral spinal roots send information to the muscle; the dorsal spinal roots transmit sensation from the muscle to the spinal cord. In the operation, the neurosurgeon divides each of the dorsal roots into 3-5 rootlets and stimulates each rootlet electrically. By examining electromyographic (EMG) responses from muscles in the lower extremities, the surgical team identifies the rootlets that cause spasticity (tightness or rigidity that James experiences as a result of spastic diplegia cerebral palsy). The abnormal rootlets are selectively cut, leaving the normal rootlets intact. This reduces messages from the muscle, resulting in a better balance of activities of nerve cells in the spinal cord, and thus reduces spasticity.

This significant reduction of spasticity (in some cases even eliminating it if possible) will have a huge impact on James' mobility and quality of life. Dr. Park expects the following improvements by having SDR:

His spasticity will be permanently reduced, his sitting and standing postures will improve, his transitions between postures will be easier and faster, his balance and level of comfort will improve and he’ll be able to walk using a walker. Crutch walking is possible. As you can imagine, this brought tears to our eyes reading this on Monday. We so want these things for James. Some new followers, or people who haven’t met James in person, may wonder, what can he do now? Because James is a level 4 (out of a 5 level gross motor classification system), he has very limited mobility. He has a hard time sitting for a long period of time without falling over and cannot get into a seated position on his own. He can army crawl (on his stomach) but cannot four-point crawl at this point. He needs assistance with all standing positions and because of the high level of spasticity, his legs scissor a lot making walking movements hard as well when he uses a walker. Because James’ speech is limited right now, it is sometimes hard to tell if James experiences any pain with these challenges stated above. Sometimes I think he is quite uncomfortable. It brings me great joy to know that James has been given a life-changing opportunity with this surgery! Following many stories of children around the world getting SDR with Dr. Park, it is clear that #sdrchangeslives.

The surgery is just the first part. The rest is up to our hard-working warrior to do intensive rehabilitation (5 days a week) for a year following the surgery. This surgery is not a cure. James will still have cerebral palsy – the brain injury is still there – but this allows his body to relearn a way of moving without spasticity holding him back.

At this point James is scheduled for surgery in 2020. It goes to show you how sought after Dr. Park is (people from all over the world come to him – mostly kids aged 2-5). We are on a cancellation list which provides as little as 6 weeks notice should an earlier date become arrival (which we are hoping for). So the waiting continues – if you haven’t read it yet, check out my post about waiting here. In our ideal world, James would be getting the surgery this year. But first we will need to fundraise. I’m sure your next question as you read this will be – what does it cost? We are working on a specific cost breakdown that we’ll be sure to post soon. Another question you may have is, is this surgery available in Toronto? As of January of last year it is actually. SickKids did the surgery in the nineties, and with much scrutiny, it has been brought back to SickKids with a very limited criteria. James does not fit their criteria. Dr. Park recently performed his 4000th SDR surgery and we have the utmost confidence of putting our son in his hands.

Thank you for all the incredible support and encouragement of our acceptance for SDR! We are so thrilled this path that has been walked many times, is well known to our dear CP community, and is a reality now for us! We know what is in our future (hopefully sooner future – please be praying for a cancellation date!) and we are so excited! Thanks for journeying with us!

We went to the Annual SDR Picnic last summer (for those who have had SDR in St. Louis or interested). Look for us on the right :)