Devoted mom wins award caring for disabled son

Devoted mom wins award caring for disabled son. Gavriel Levy, left, Joseph Levy, Baylee Levy and VHA Home HealthCare president Carol Annett. Photo/COURTESY

She was thrilled when she and her husband Joe found out she was expecting twins.

But Levy's pregnancy was difficult and left her bedridden.

Despite following doctors' orders, she was forced to deliver her babies early at 28 weeks, about 12 weeks early.

Her son, Gavriel, had a routine delivery. Although he weighed only two pounds 14 ounces, he was soon thriving.

His twin brother, Sar, was not nearly as fortunate.

Sar was born by emergency caesarean section with the umbilical cord wrapped around his neck.

Just two pounds, his difficult entry into the world ushered in countless medical problems, including contracting a rare form of meningitis as a baby.

Sar was also soon diagnosed with cystic fibrosis and cerebral palsy.

"Everything was life and death. It was just one thing after another but he was a fighter," said Levy, who was honoured this week for her care of Sar.

"It was a difficult time (right after the twins were born). You're visiting one, and thank God he is healthy. You visit the other one and you're afraid to look at him. There were all of these machines. It hurt a lot."

Now 24, Sar also has other medical problems including diabetes and incontinence. He takes more than 100 pills and requires four injections daily.

He is unable to speak and read, although he uses a communication board and pictures.

Despite two operations on his legs as a child that allowed Sar to walk for awhile, he lost the ability as he grew. He has suffered through massive seizures and burst veins in his esophagus and now may require a liver transplant.

"He has been through some gruesome things," said Levy, who lives with her family in the area of Bathurst Street and Steeles Avenue.

Although she was initially fearful of bonding with Sar because she and Joe were repeatedly told by doctors he would soon die, she has spent the last two dozen years caring for her son, who she says brings unconditional love and joy to his family.

"They said he wasn't going to make it but he had his own agenda," Levy said.

To recognize her unwavering commitment to Sar's wellbeing, VHA Home HealthCare, which has provided care to Sar over the years, presented Levy with this year's Heart of Home Care award on Monday, June 6 at its Toronto head office at 30 Soudan Ave., southeast of Eglinton Avenue and Yonge Street.

VHA president Carol Annett called Levy's love, compassion and strength an inspiration.

"She is a caregiver, she is a role model that her children can look up to but most importantly, she's a mother who is incredibly proud of her son, Sar, his struggles and triumphs."

Despite the many challenges Sar and the whole family have faced, Levy lovingly boasts about her son.

Sar wakes up happy and raring to go every day, including to a day program for adults with physical and developmental disabilities.

Determined, curious and intelligent in his way, he loves music and often makes it clear he wants his family to sing for him.

A family friend tapes episodes of Wheel of Fortune and Jeopardy for him and although Sar doesn't necessarily understand the content of the shows, he plays and replays the parts where people win because he is excited to share their happiness.

He enjoys swimming and used to love riding a horse because it gave him a sensation of walking, an activity he unfortunately had to give up due to his incontinence.

His mother has even caught him watching pretty girls.

Sar's best friend is Gavriel, whom Levy said has grown into a sensitive and compassionate young man in part from caring for his twin brother.

Levy doesn't dispute having a son with such profound medical problems has been difficult.

"When you're pregnant, you have great expectations. You think all these wonderful things are going to happen. It was nothing like I was expecting," she said.

"You have a loss that you still grieve when you have a child that is disabled. You grieve what you think he is missing out on."

But she likens her family's enlightening journey with Sar to planning a dream vacation to Italy.

You research the trip, learn needed Italian phrases, imagine seeing the Sistine Chapel and taking a gondola ride in Venice.

Finally, comes the day when you pack your bags, head to the airport and get on the plane. But when you disembark, you find yourself in Holland.

"The important thing is it is not a horrible, disgusting place. It is just different," Levy said.

While you aren't enjoying all the Italian experiences you once dreamed of, you begin to appreciate the beauty of Holland's windmills and tulips, Levy said.

"The loss of that dream is very significant but if you spend your time mourning that you didn't get to Italy, you will never enjoy Holland," she said.

"It just doesn't have to be the same as what you expected it to be. (But) there is beauty and joy in all life."