June is Spina Bifida Awareness Month

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.”