Stories

Austin’s Story

Chiari Malformation is a congenital defect in the lower back of the head where the brain and spinal cord connect. The brain tissue extends into the spinal canal, putting pressure on the brain that can cause symptoms such as headaches, decreased strength in the arms and hands, neck pain and other health problems. The severity and impact of symptoms will vary for individuals with Chiari Malformation, thus making diagnosis and treatment difficult to determine until after the onset of specific signs and symptoms.

Eight-year-old Austin, the youngest of Michelle’s three children, was born one month premature but overall healthy except for having clubfoot that would require reconstructive foot surgery at seven months of age. When his cast was removed eight weeks after the surgery, he would not use his right leg and began to show right-sided weakness, alerting his parents that something was awry. His parents, Michelle and Matthias, continued to seek medical help in search of a diagnosis despite being told by doctors that he did not meet the criteria for a Chiari Malformation or Tethered Cord Syndrome diagnosis.

After months of appointments at Grandview Kids for bracing, casting and post-surgery rehab treatments, Austin’s physiotherapist, Winnie, went above and beyond her duty as she advocated for the family and sent a referral to Sick Kids Hospital for further investigation. During physiotherapy sessions, she noticed that Austin’s case needed to be looked at differently as the underlying cause seemed not to be muscular but neurological. After completing a number of MRIs and seeing symptoms worsen, Austin was finally diagnosed with Chiari Malformation at age one.

Treatment for Chiari Malformation is determined based on the severity and state of progressiveness of the illness. Austin’s first seven years of life would be spent at endless appointments at many of Sick Kids’ clinics, including their Pain, Neurology and Neurosurgery Clinics, and working hard during physiotherapy (PT) and occupational therapy (OT). He could not walk for more than 15 minutes at a time, required the use of a stroller at school, was quickly drained of energy and had neurological damage to his right hand and pelvic floor due to Chiari Malformation.

Austin’s parents continued to fight for further medical intervention due to his poor quality of life. On June 05, 2023, Austin finally received his life-changing Chiari Malformation Decompression Surgery. His abnormally enlarged tonsils were removed along with two inches of his skull and C1 and C2 of his vertebrae. Since his surgery, Austin’s quality of life has improved exponentially. Once too exhausted to participate in extra-curricular activities, he is now on the soccer team, has found a love for running track and swimming, rides a bike, and does it all in a way that exceeds doctors’ expectations.

Although Austin still has difficulty keeping up with his peers due to his fragility, tremors, right-sided weakness and right-hand nerve damage, his tenacity is palpable. “I don’t quit,” is Austin’s motto. He pushes himself in PT and OT without complaint, aiming to get stronger. Michelle believes that his fierce determination is shaped by having always involved him in his care. From reviewing brain MRI images to reading medical books geared for kids and watching videos on procedures that he will have done, “We made it normal language in our house… because we are a team,” Michelle states.

Austin has taught his family how to persevere, remain positive through the negative and always fight to be the best version of ourselves. Michelle shares Austin’s story because “being a medical mama is a lonely world,’ and she does not want anyone to feel alone as she did. She hopes that her story encourages and empowers other families to be their own champions, knowing that individual stories matter and that, collectively, these powerful stories can make meaningful changes for future generations.

Written by Isabella Globe, Family Engagement Team summer student

Despite being born into it, I have never had a clear definition of what is entailed in the ‘role’ of being a sibling to someone with a disability. It is different for everyone. It is an unspoken understanding that silently works to create the family dynamic.

My brother, Lucas, is one year older than me and was diagnosed with cerebral palsy at birth. As the younger sibling, this has always been my “normal” and will forever be a part of my life.

I often get asked by caregivers if I feel burdened or bitterness, and my honest answer is no. I would be lying if I said every day was easy and I have never struggled, but I don’t know my life to be any other way. I have always found it difficult to find my place as a sibling, as I am not a caregiver, yet I am directly involved in my brother’s life and affected by everything that comes with it. However, I hesitate to relate to caregivers, as I simply cannot share their experiences or resources in a comparable way.

Through my experience, I have always found that siblings are often a forgotten piece of the family and do not get recognition as often as they should. I believe that, especially as children, we can be overlooked and seen as naive and unaware of the weight that certain decisions and events may have, but this is not true. All siblings in these circumstances each have unique perspectives that allow for a deeper understanding from everyone. When I was a child, I remember offering suggestions to my brother’s care staff, and I received no acknowledgment. Lucas is nonverbal, so advocating for him has always been a large part of his life. My insight on my brother’s cues and ability to offer valuable tips to help manage situations that I had been experiencing firsthand my whole life was taken for granted. In many cases, I am the person there when my parents cannot be.

Siblings fit into a variety of roles, such as advocates, friends, support, role models and more. The “sibling voice” is scarce and extremely important. Through my summer position at Grandview Kids, I found this opportunity to share the need for the voice of siblings with lived experience. It has made me stronger, empathic, resilient and understanding of what others experience. I have been able to share my story and aid others by speaking directly about how I watched my family navigate to where we are today. By gaining the sibling perspective, a more complete picture of each family can be achieved.

For caregivers, my hope is that you will gain appreciation and understanding for siblings. We know more than you may think and can often offer valuable insight. Most importantly, I want siblings to know that there are others in their shoes and that their input, feelings, and experiences are all valid.

This month is observed in June each year to increase awareness and understanding of scoliosis, a medical condition characterized by an abnormal sideways curvature of the spine, forming “S” or “C” shapes instead of a straight line. This condition can range from mild to severe and can occur at different stages of life, with idiopathic scoliosis being the most common form.

The severity can vary and affect different parts of the spine. Idiopathic Scoliosis, which has an unknown cause, impacts about 3% of children and is usually noticed between ages 4-17. It can be associated with other conditions like muscular dystrophy or cerebral palsy. Signs of scoliosis include uneven shoulders or waist, a prominent shoulder blade, or uneven alignment of the hips. X-rays measure the curve and rotation of the spine, aiding in diagnosis and treatment planning.

Various interventions are available to manage scoliosis, prevent the curvature from worsening, or alleviate associated pain. Customized braces can help halt the progression of the curve and reduce pain. Targeted physical exercises like the Schroth method provide significant support and relief. In cases where non-surgical methods are ineffective or if the curvature is severe, surgery may be considered.

Scoliosis Awareness Month plays a crucial role in improving the lives of individuals affected by scoliosis by increasing awareness, providing support, advocating for improved care, and fostering a sense of community. It aims to promote early detection, early treatments, and overall well-being for those living with this condition.

Read Fadia and her son’s story:

Our journey with my son’s scoliosis has been a challenging and emotional experience, filled with highs and lows that have tested his resilience and determination. It all began with a slight curve in his spine that seemed inconsequential at the time. The doctors couldn’t pinpoint a specific cause, but I have always believed that his leg length discrepancy played a crucial role in its development. As his leg discrepancy increased, so did the severity of his spinal curve.

I first noticed the curvature when it was just a few degrees, something that didn’t initially alarm me. However, as years passed, the situation worsened dramatically. It wasn’t until his hip femur head began to degenerate rapidly in the shorter leg that the gravity of his condition became painfully clear. The doctors measured his spinal curve at 40 degrees, a startling revelation that made us realize how serious things had become. Given that my son doesn’t have arms, traditional mobility aids like crutches were not an option. Instead, he was provided with an electronic wheelchair to help him navigate school and other places where he needed to cover longer distances. This contributed to making his trunk muscles weaker and his spine bending more. Despite the severity of his condition, the doctors noted that his spine was still quite flexible and told us that we could wait some more before surgery. A brace was not suggested because the curve had already progressed beyond the point where it could have been effective in halting further bending.

He was placed on a waitlist for spinal fusion surgery, a wait that stretched painfully to 1.5 years. During this time, his condition deteriorated, the curves increased, and so did his pain, which by this time was constant and only relieved by lying down. By the time he finally underwent surgery, his spinal curve had increased to a staggering 87 degrees. The surgery was extensive, lasting 11.5 hours, and involved fusing his spine from T4 to L4. It was a major operation that required significant blood loss management and post-operative care, including iron supplements to aid his recovery.

Following the surgery, my son was transferred to Holland Bloorview for a month-long rehabilitation program. The team there, along with the invaluable support from Grandview’s occupational and physical therapists, became our lifeline. They meticulously assessed his daily living needs and made numerous accommodations at home, at school, and in his wheelchair to ensure he could navigate his world more comfortably. With a straighter spine, my son gained 2.5 inches in height. This positive change brings a smile to his face every day.

Today, the constant pain that once plagued my son is a thing of the past. Although his spinal flexibility has been greatly reduced, the quality of his life has improved immensely. He is a much happier boy now, freed from the constant pain that once dominated his days. Thanks to the marvels of modern medicine, his scoliosis has been significantly reduced, and our family is incredibly grateful for the life-changing impact of this surgery. Our journey has been arduous, but seeing my son smile again makes every moment of struggle worthwhile.

This Scoliosis Awareness Month, I hope our story can offer hope and encouragement to other families facing similar challenges.

Brain Injury Awareness Month, recognized each June in Canada, provides an important opportunity to bring attention to the prevention of traumatic brain injury (TBI) and to promote strategies to improve the quality of life for persons living with TBI and their families.

Claudia N., a Grandview parent and member of our Family Advisory Council (FAC), tells her son Reid’s story:

Brain injury is invisible and often misunderstood. The scars may not be obvious, but they are there. They show up in the way you move, talk, and process information. My son acquired a traumatic brain injury (TBI) after a rare complication of brain inflammation during influenza.

Claudia taking a selfie of herself with her two children. — Claudia N., with her children.

Claudia's son and daughter in a portrait like photo. — Claudia N., with her children.

He was a rep-athlete in hockey, basketball, soccer and baseball. The more contact he had in sports, the better. Now he can no longer have contact. This was his identity. He had to re-learn everything, from riding a bike, walking, and running to tying his shoelaces.

It is heartbreaking to have to answer the question, “Why doesn’t my brain or body work like it used to?” daily. Grandview Kids showed me there is hope after a TBI, but it begins when it is taken seriously by others. Instead of hockey, they introduced him to golf. Instead of tackle football, they are teaching how to swim. He was resistant at first but is now secretly loving it. They showed him that there are different directions that can just be as fulfilling. When he wanted to give up, they simply wouldn’t let him.

Claudia's son, Reid, sitting in the hospital bed for rehabilitation. — Reid in the hospital for rehabilitation.

Claudia's son, Reid, playing wheelchair basketball with his friends. — Reid in the hospital for rehabilitation.

As his mom, seeing him feeling so lost every day is excruciating, and I wish I could trade places with him. Disabilities come in all shapes, sizes, and visibilities. Yes, this injury is invisible, but the impact and effects are as lifelong as visible ones.

The good news is that with the right support and accommodations, there is light at the end of the tunnel. Next time you meet someone with a TBI, just know how much more there is behind those sweet eyes looking back at you.

Spina Bifida Awareness Month is nationally observed in June. Spina Bifida is the most common congenital birth defect that causes disability. It is a condition that occurs when the spine and spinal cord do not form properly. Many babies born with Spina Bifida will also have or develop hydrocephalus, requiring a shunt to remove excess fluid from the brain. Although there is no cure, there are surgeries to help living and growing with Spina Bifida, and in-utero surgery designed to treat it if detected early enough.

Families like Weston’s share their stories to continue to raise awareness of living with Spina Bifida:

Weston is 13 years old and enjoys playing with Lego, reading Diary of a Wimpy Kid books and being a comedic teen. He loves to affectionately surprise his mom, Krystal, with a kiss on her cheek or hand, have pillow battles with his dad, Ganon, and play with his brother, Jase.

Weston was also born with Spina Bifida, having a hole in his lower back with his spinal cord sticking out. This was corrected through surgery shortly after birth. After further genetic testing prompted by having multiple anomalies, including a heart defect and eye issues, and not meeting many developmental milestones, he was officially diagnosed with Rubinstein Taybi Syndrome 2 (RTS2) in 2020. RTS2 is a rare genetic disorder, and in Weston’s case, caused by a partial gene deletion. He was later diagnosed with autism spectrum disorder (ASD) this past year.

Since Weston looks like a typical kid, it can be challenging for people to fully understand, respect his boundaries or forgive his lack of a filter due to his diagnosis. Grandview Kids has been a part of Weston and his family’s lives since he was a baby.

“Grandview will always hold a special place in our hearts. Weston feels right at home when he walks through the main site doors. He feels safe and comfortable there. The staff are always the sweetest with him too. Our family also feels the love of all the staff. Grandview has been one of our biggest support systems for the last 12 years,” says Krystal.

Weston has received services for physiotherapy (PT), recreational and occupational (OT) therapy, speech-language pathology, social work, hearing, eye and medical clinics, and a bike clinic. He also attended Grandview School for junior and senior kindergarten. Weston does not require the use of any assistive devices. In more recent years, his family has benefited from the Family Engagement Team’s inclusive events where whole-family care is at the forefront.

As a child with Spina Bifida, Weston also visits Holland Bloorview Kids Rehabilitation Hospital a few times a year to visit the Spina Bifida Clinic. In a single day, he may see multiple specialists, including a pediatrician, OT, PT, Urologist, ultrasound, social worker, and orthopedist.

As a parent of a child with physical, communication and developmental needs, it is sometimes difficult to track progress, especially when measured against peers. When Krystal thinks back on how far Weston has truly come, it is a marvel to wonder at. “He went from zero words to talking sentences while attending Grandview School and receiving weekly therapy and continued support from special education teachers,” says Krystal. “He still walks robotically, and his reflexes will always be an issue, but he is getting better. Weston has some physical barriers that he may never overcome just because of his body makeup. But, continuing to receive blocks of therapy and support from Grandview helps.”

Moyamoya disease is a rare blood vessel disorder in which certain arteries in the brain become blocked or narrows. This can cause a brain bleed or stroke, and the damaging effects of strokes can include seizures, paralysis and vision problems. Moyamoya may occur at any age but most commonly affects children.

Grandview Kids Client Story:

Three-year-old Xander was only 10 months old when he had a seizure, which turned out to be a stroke. While having an MRI done in-hospital, they discovered a blood clot and a stroke actively occurring. His MRI findings showed that his vessels had “disappeared,” and he was diagnosed with Moyamoya, which in Japanese means a “puff of smoke.” Xander underwent bilateral brain surgery to help with blood flow and better the success of stroke prevention. Unfortunately, soon after the surgery, he ended up having another stroke requiring time spent at Holland Bloorview Kids Rehabilitation Hospital to help regain his left-side strength.

The strokes that Xander suffered from affect his daily living as they have caused severe and long-lasting damage to his motor control. His left-hand does not function properly, so he struggles to carry things and almost forgets the left hand exists. He had a brace for his left hand as well as a brace for his leg which had also been weakened by the strokes. Xander has chromosomal abnormalities and an autism spectrum diagnosis and faces Ear, Nose and Throat (ENT) and digestive challenges. Xander is part of Grandview Kids’ Complex Care Clinic, a multi-partnered program that brings local complex care planning to deliver continuity of care coordination to children with complex medical needs. Through Grandview Kids, he also receives physiotherapy, speech-language pathology occupational and recreational therapy.

As a child with complex medical needs due to a rare disease, his parents find themselves on a difficult and foreign path. There remains a lack of information on Moyamoya disease so Xander’s parents are provided with limited insight as to what his future may look like. Being able to manage work, safe childcare, personal relationships, and numerous weekly appointments is challenging. His parents’ biggest hardship currently is being able to find someone to watch Xander who is comfortable in supporting him with all his complex medical needs. Though he continues to improve, and his speech is returning, his parents face the unpredictability of this progressive disease. It can be exhausting having to deal with strangers who are ignorant and treat him differently or professionals who question parental intuition, but Xander’s mom, Laura, will continue to fight for her child. “You know your child the best, so if you think something is wrong, keep advocating for them.”