North York mom Lindsey Yeskoo hailed a ‘Hero in the Home’
http://www.insidetoronto.com/news-story/5694287-north-york-mom-lindsey-yeskoo-hailed-a-hero-in-the-home-/
Fannie Sunshine
North York Mirror | Jun 24, 2015
Emily's HouseEmily Yeskoo is surrounded by her family during a breaking ground ceremony for a new children's hospice in her name, Emily's House. Sister Madeleine, brother Christopher and mother Lindsey.
Emily Yeskoo was an athletic, artistic 8-year-old who was full of life when her mom, Lindsey, started noticing odd changes.
The little girl began having absence seizures, where she would blankly stare for 30 seconds at a time. She wasn’t able to add two plus three, but could do long division. She couldn’t spell the word ‘better’ but writing out ‘chrysanthemum’ wasn’t a problem. Holding a pencil became troublesome and her writing now looked like lightning.
“Emily didn’t know how to keep conversations going, how to keep friends,” her mom said.
For the next two years, while the family moved from Japan, Washington and Shanghai due to Lindsey’s husband’s work as a diplomat, Lindsey took Emily to different professionals, who all agreed something was wrong, but didn’t know what.
Lindsey took Emily out of her Shanghai school after teachers told her they didn’t know what to do with her daughter.
“No one thought it was a medical problem,” she recalled. “They thought it was a learning disability.”
At the height of SARS in March 2003, Lindsey and Emily boarded a plane to Washington to see if American physicians could pinpoint what was going on with the pre-teen. The diagnosis from a pediatrician neurologist came in a day and a half: metachromatic leukodystrophy, or MLD.
The fatal, degenerative, inherited illness affects the brain cells and the layer that protects the nerve cells, blocking messages from the brain to the rest of the body.
“The pediatrician had treated a number of families with the disease and was pretty sure this was it,” said Lindsey, who had never heard of MLD prior to Emily’s diagnosis.
“We were told at the very most Emily had three years to live. If I had to describe MLD, it’s ALS, MS and Alzheimer’s all in one disease.”
Twelve years later, Emily is now 22 and requires constant care. Lindsey is her daughter’s primary caregiver, sleeping in her room, bathing and dressing her, and making sure she receives nutrients through her feeding tube, as she is no longer able to swallow. She can’t speak and requires the use of a wheelchair and is often bed-bound.
Emily, Lindsey, and her two healthy children, Christopher and Madeleine, moved back to Lindsey’s hometown of Toronto in 2005, settling in Bayview Village. Emily had been under the care of doctors at The Hospital for Sick Children, whom Lindsey credits with saving her daughter’s life when they inserted a feeding tube that delivers nutrients straight into her heart after her traditional feeding tube failed.
A typical day starts with Emily screaming in the early morning hours, with her fully awake up by 5 a.m. A nurse contracted from the Central Community Care Access Centre (CCAC) tends to Emily from 7 a.m. to 3 p.m., while Lindsey gets some time to herself to do some shopping or house work. From 3 p.m. to 7 a.m., Emily is Lindsey’s full responsibility.
Lindsey was one of more than 150 caregivers who received CCAC’s Heroes in the Home Caregiver Recognition Award June 18 during a ceremony in Markham.
“Heroes in the Home acknowledges caregivers for the important work they do,” Lynn Harrett, interim CEO of Central CCAC, said in a release. “It’s about saying thank you for their compassion and dedication to caring for others. It’s also about all of us being touched by their stories and the difference they make in the lives of others, and drawing on that inspiration as we work together to provide outstanding care at home and in the community.”
Central CCAC’s group of honourees include family members, friends, community volunteers, personal support workers, care co-ordinators, nurses and therapists.
Central CCAC care co-ordinator Sandy Hustler, who nominated Lindsey for the award, called the mother of three an “inspiration”.
“I am not sure how Lindsey accomplishes all that she does, but I know she counts every day with her daughter as a blessing,” Hustler said in a release. “She is one of the kindest and most genuine women I have ever met. It’s a tough road she has to travel and she is an inspiration to all of us.”
Lindsey, who has received help from Central CCAC since 2007, said Emily was the real hero.
“The pain she has to live with, and her determination to live and her spirit to forge on keeps me going,” she said. “I am grateful (for the award), it’s a big honour.”
Lindsey is also a member of the advisory council for Emily’s House, the city’s first pediatric hospice named after her daughter, which opened in 2013 in the renovated Governor’s House at 562 Gerrard St. E.