Mom seeks to light the way for others

Photos by Storey Wilkins

By Louise Kinross

Narges Karbasi can only think of one medical interaction that wasn’t helpful when she learned her daughter Lilly had a rare genetic condition called 1p36 deletion syndrome.

“At her first birthday the neurologist gave us the results of a microarray test,” Narges says. “He said ‘This is the name of the syndrome, go and google it.’ He didn’t tell us about it. We googled it and we were in shock, because you always see the worst things [online]: she’s going to die, she’s going to have heart problems. It was the worst experience.”

But soon after, Narges spoke with clinicians, other families and even acquaintances that gave her back a sense of hope.

“We took her to the pediatrician and I was crying. I said ‘Did you see the report? She may not walk, she may not talk.’ The doctor said ‘Yes, she may not walk and she may not talk. But she can love.’ I thought yes, Lilly wants me, she loves me. These are the words that helped me a lot.”

After getting Lilly’s diagnosis, Narges and her husband Farhad initially kept the news to themselves. “It was like a grieving,” she says. “Before telling the world, we cried with each other and we screamed and shouted and said ‘why?’ When we told people, we wanted to talk about it in a very normal, happy way, because we thought if we cry or are sad, people will always look at her and think ‘poor baby.’ At first it was so difficult to talk about. I practised on people I don’t know. In the street, in the park. That helped me get used to the words so I could tell close family.”

Narges searched online and found a Facebook group for families of children with 1p36. “The moms there are amazingly supportive,” she says. “They have children from newborn to 40 years old. I can say that each is a doctor, a geneticist, because of all they know. You can ask any question and within a couple of hours you have hundreds of people responding with their experience. The other thing that helped me was seeing that there were so many parents who had adopted kids with the same syndrome. It’s one thing when this is my kid. But for parents to adopt not one, but two children, with this syndrome, and they have a happy life.”

One day Lilly was out in a stroller with a babysitter. A neighbor who was driving by stopped to ask the babysitter if Lilly was walking yet. She wasn’t, as her motor skills were delayed. The neighbor wrote a note for the sitter to give to Narges with the name and phone number of a physiotherapist who did Medek and had helped her daughter. “At first I didn’t like it when I got the note,” Narges says. “I thought why is she doing this? Then my husband said give her a call, maybe this is a sign.”

Lilly, who turns five next month, began walking last year, and Narges attributes it to the Medek therapy. “She couldn’t even roll or sit from lying when she started,” she says. “We are so excited for this summer because it’s the first summer she can walk. Lilly is a happy girl who loves to be independent. She fights for what she wants and she gets what she wants—it doesn’t matter if you understand her, or if she can’t say it, she will get it. She enjoys being outside and we’re so excited about having her first birthday party outdoors.”

Through the physiotherapist, Narges learned about the babies group offered through Holland Bloorview’s Play and Learn. Parents and babies attend weekly for sensory and motor play and live music. “Seeing so many moms like me and kids like Lilly was a great first step into this new world,” Narges says.

Every month an infant development specialist came to visit Lilly at home. “That service is so helpful. They come into your home and see how you live, and help me with specific things. For example, Lilly is very sensitive with what she eats, so the person made an appointment to come at her snack time so she could help with snack.”

Lilly then spent two years at Play and Learn nursery school. “It’s amazing. It’s like her home and she likes everybody. They plan for each kid and they love their jobs. The teachers even check on me, too. They’ll say: ‘How are you doing? Why are you not smiling today?’”

Lilly uses sign language and pictures to communicate and is attending kindergarten in our integrated education and therapy program in September.

Narges says she’s learned to live in the moment. “I stopped thinking of the future. If today Lilly is waving or pointing, a point is a word you can live a life with. I enjoy that moment without worrying about what should be next. There is no ‘what if’ in my mind anymore.”

Narges, who moved to Canada from Tehran, Iran with Farhad in 2009, says Lilly’s syndrome has brought the couple closer. “Our bond and love is way stronger. When you know you have a shoulder to lean on and someone who is always there to talk to, it helps. Being a believer in God has also helped me a lot. I said “If that’s what God wants for me, I should be on board.”

Narges says she prefers not to use the terms disability or special needs. “What I like to call it is unique, because I learn that every person is unique in his or her own way.”

Lilly has an older brother Dylan, and Narges says it’s important for him that the family “fights to be happy and to have as close to a normal life as possible. Disability minimizes the thing you can do, but as a family we never accept no for an answer. We never say, ‘okay, that’s not for us.’ Everything is for us. We always try to find a way. For example, we like to ski as a family, and through searching everything my husband found something Lilly can sit on and we can still ski together. Travelling isn’t easy, but we should do it. We don’t want Dylan to think ‘we can’t do this like my other friends because of my sister.’ We didn’t want his life to be on pause. We say this is the life we have and we try. If we can, we can. When he was younger, Dylan questioned why Lilly wasn’t walking or talking. That was a challenge not to minimize his feelings.”

Narges believes Dylan has developed many positive attributes because of his relationship with Lilly. “These siblings are going to be different kids. They’re going to be caring. I see how Dylan cares about his friends, how he sees people equally. He never points at someone who has a disability because he learns that that is who that person is.”

Narges likes to pair times when she takes Lilly to therapy with an activity Farhad does with Dylan. “So I will say ‘If you are playing football, Lilly will have speech therapy.’ She has a program and he has a program.”

Narges is a big believer in self-care for parents. “We need to do something we really like, even if it’s just for one hour a day. When Lilly went to Play and Learn each morning, I’d make a joke that the only thing I didn’t do is go to Tehran and see the family. I shop, I hang out with friends, I go to the coffee shop, I walk or go to the gym. Those two hours are mine. They become the best time of the day. We should find a time for ourselves, even doing nothing, but being on our own.”

Narges says next year when Lilly is in school full day, she’d like to volunteer at Holland Bloorview to help other parents. “They need to see one mother or father or family and say ‘they are happy, they have a happy life.’ That’s the most helpful thing. When you see a mother in real life who is laughing, dancing, having her life—it doesn’t matter how her kid is doing—she is happy and you think ‘Oh, maybe one day I can be that person.’”

Like this story? Sign up to receive our monthly BLOOM e-letter in your inbox.