Parent Mentors: A Strong Voice and a Helping Hand for our Kids and Families

Emma and Mary this past summer.Emma Rutherford is a vibrant young woman who has a great sense of humour and an incredible zest for life. However, at times, the significant challenges presented by Dravet syndrome and epilepsy have threatened to dull her sparkle. Dravet syndrome is a rare genetic disorder defined by frequent debilitating seizures. When Emma was seven months old, her mom, Mary, looked on in horror as Emma seized for 20 minutes. Her next one lasted more than an hour, and Emma was rushed to Children’s Hospital where she was intubated and heavily medicated to mitigate the consequences of her seizure. It was a week before Emma could even open her eyes and Mary shares, “I thought she wasn’t coming back and that the baby I knew was gone for good.”

As a parent faced with the difficult reality of a young child who would have up to 40 seizures each month, Mary embarked on an unexpected journey that led her to Thames Valley Children’s Centre (TVCC), the regional rehabilitation centre for children and youth with physical, communication or developmental needs. Within the warm and welcoming walls of TVCC, Mary discovered the Parent Mentor Program.

Throughout her life, Emma has experienced some developmental delays, however, her mom recognizes Emma’s infinite potential and refuses to settle for anything less than what her daughter requires to thrive – especially when it comes to her education.

“It may be more challenging to educate a child with special needs, but that doesn’t make it any less important or imperative that it happens,” Emma’s loving mom asserts.

Amongst the general public there is a lack of understanding regarding the ways in which Emma’s condition impacts cognitive development and academic performance. “There have been times when things really fell apart. Given the incredible challenges Emma faces when it comes to learning, there have been years when she was continuously being failed in things I knew she could do,” shares Mary. TVCC’s Parent Mentor Program helped Mary to better understand her and Emma’s rights. Parent mentors bring their knowledge and experiences to help support parents in their advocacy role. “Every parent wants what is best for their child, but you need everyone involved in their developmental journey to listen to each other and really understand the needs of the child. These mentors helped to set the tone to motivate everyone to pursue solutions that would support Emma to be her best,” Mary explains.

With encouragement from TVCC’s mentorship program, which is supported by Children’s Health Foundation donors, Mary and Emma have overcome many obstacles, and now Emma is “really thriving.” The benefits of effective advocacy have far exceeded Mary’s expectations; Emma’s stress has decreased, which has significantly reduced the frequency of her seizures – a gift that Mary could not be more thankful for.

Children’s Health Foundation sincerely appreciates our donors who recognize that every child deserves the chance to pursue an enriching life. Support of the Parent Mentor Program at Thames Valley Children’s Centre is a current funding priority, and your contributions to this initiative will help kids, like Emma, to learn, grow and play optimally. Please visit www.childhealth.ca/donate to create a culture of compassion and understanding for our kids and families, so they may pursue their endless potential.