Nolen's Story

Nolen was born on March 31, 2010 with the appearance of a third degree burn from his elbow to finger tips and a dropped wrist on his right arm. Before I could hold him, he was immediately whisked away to the NICU and remained there for seven days.


Despite numerous visits from virtually all departments at Mount Sinai Hospital and SickKids, nobody knew what caused the presentation of his arm and we were discharged without a diagnosis.

When Nolen was nine days old, we went to SickKids for an ultrasound of his right arm. The ultrasound showed that he had a blood clot in his right arm that was healing on its own. However, the blood clot had already done significant damage and permanently impacted muscle, tendons, and nerves in his right arm. For the first 12 months of Nolen's life we thought his challenges would be limited to his right arm as Nolen had been seen three times by the neurology department at SickKids and every time they encouragingly told us an MRI would come back normal.

Nolen had a brain MRI on March 21, 2011 - ten days short of his first birthday. We learned the next day that he did in fact suffer a stroke in utero. Unfortunately, it was a rather large ischemic middle cerebral arterial stroke affecting his left hemisphere – to this day, the medical community has urged us not to look at the MRI images. Nolen's stroke impacted the muscle tone and sensation of the right side of his body, as well as gross motor development, language, and cognitive ability. We were quickly thrown into the world of prenatal paediatric stroke...and woken up to how common it is despite being so unaware during my pregnancy. According to Dr. Gabrielle deVeber, one in 2,800 babies each year suffer a stroke prenatally. Based on the type and timing of Nolen's stroke, Nolen's neurologist gave us an encouraging prognosis and told us that all of the rehabilitation we had performed during his first year of life significantly improved his recovery from stroke.

Therapy has become a state of life in our house. For an MCA stroke such as Nolen's, therapy must include physiotherapy, occupational therapy, speech therapy, infant development therapy and can be augmented by alternative therapies such as Feldenkrais. We've been fortunate to have the entire family participating in therapy – parents, grandparents, and even his older brother sets up obstacle courses for Nolen. We try to make therapy fun, which keeps us on our toes to constantly find ways to combine Nolen's new favourite activity with therapy exercises. Nolen's wonderful disposition and charming smile creates a special bond amongst all of his therapists. And, while still quite young, he shows tremendous determination to learn everything that we challenge him on.

And remember, kids are kids! After months of therapy focused on trying to pull himself to standing, Nolen finally pulled himself up to standing after his brother left his unwanted chocolate ice cream on the coffee table. We were shocked and thrilled!

We never focused on when Nolen achieved a milestone as we knew that he wouldn't develop like a typical baby. However, we focused on his ability to achieve milestones at his own pace and that the trajectory of achieving new milestones continue. And achieve milestones he has! While slow at the beginning, Nolen went from rolling for the first time at 11 months to walking by 16 months. He didn't say “mama” until he was 18 months old, and, while his speech is delayed, he has about 100 words in his repertoire so he can communicate with us.

While the initial diagnosis was devastating and there were times that I felt I couldn't continue, there were two conversations during Nolen's first year that shaped me to be determined and motivated to help Nolen develop to the best of his ability.

The first conversation was with my mother in the early days of the NICU. My mum was a nurse in the 1970s that quit her job to raise my sisters and me. She told me that when she was practicing nursing, it was common knowledge that nerves don't regenerate. While widely accepted at the time, it seems ludicrous now to think that was ever believed. So, in the first year of Nolen's life, I stimulated the nerves in his right arm the best I could – massaging, stretching, vibrating, touching, and tickling his arm and hand numerous times a day. And today, Nolen can now feel each finger of his hand! Based on today's clinical reality, a dead muscle can't re-generate, but a muscle that is alive (no matter how small) can regenerate and strengthen. This knowledge led me to research and find threshold electrical stimulation (“TES”) that would stimulate the pathways from Nolen's right arm to his brain while he wasn't capable of it. With the use of TES, Nolen now has full shoulder rotation and has recently learned to flex his elbow.

The second conversation was with a retired doctor, whose practice, in her later years, had incorporated her medical knowledge with her athletic knowledge (her daughter was in the Olympics) to determine that anything is possible, if we have the time, motivation, and discipline to train like an athlete, rather than limit a child whose development is perceived to be compromised. In discussions with one of Nolen's therapists, he said that if Nolen had his MRI at birth, we likely would have given up on his ability to walk, speak, or have any use of his arm, but, because of the gains he had already made through therapy at the time of the MRI, we continued to believe in his developmental potential.

Time and again, we have been told by SickKids that Nolen's development to date is miraculous, given his stroke. We celebrate each milestone that Nolen accomplishes and reflect each day how far he has come from that early, disheartening prognosis. I love when Nolen walks toward me as I enter a room or when he reaches out to hold my hand on a walk - it is such a wonderful feeling that I honestly thought I'd never experience with him.

Nolen is our miracle boy and a fantastic example of the neuroplasticity of a baby's brain. While we continue to worry about each stage of Nolen's development and the new challenges Nolen will face, we are comforted by Nolen's determination and willpower to overcome his many challenges.

We look forward to participating in Gabrielle's Ride on July 22 nd to raise awareness of paediatric stroke and raise money for the Paediatric Stroke Fund and Cardiac Kids. SickKids has provided a tremendous amount of support and knowledge for Nolen and our family. The Paediatric Stroke Fund enables Nolen's neurologist, Dr. deVeber, and her team to conduct ground-breaking research on the causes of paediatric stroke and the best practices for helping stroke survivors recover to their full potential.

Join us for Gabrielle's Ride and come see Nolen riding his trike in support of this very special cause!

How to Get Involved
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Routes
1km
Tyke Ride

(2 & under)
1 km
Tyke Ride

(2 to 12)
10km
Family Adventure Ride
(12 & under)
10km
Family Adventure Ride
(13 & over)
25km
Country
Adventure Ride
(See Route Map)
50km
Rainbow Ride
(See Route Map)
100km
Journey of Hope

Fundraising

Gabrielle's Ride will give all members of the community, from elite cyclists to families and children, the opportunity to ride in support of the thousands of children in Canada who live with the affects of congenital heart disease and pediatric stroke.


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In order to ensure Gabrielle's Ride is a success we require many dedicated volunteers.


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Gabrielle's Ride is a charity cycle that was inspired by the life of Gabrielle Ide Cinanni and will take place annually in Oakville.


 

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Gabrielle’s Ride
5386 Linbrook Rd
Burlington, ON L7L 3T9

info@gabriellesride.com