Every week, The Huffington Post Canada will be sharing the story of a patient at The Hospital for Sick Children (SickKids) and their family. By focusing on how a stay at the hospital affects not only the child with a diagnosis but their immediate family as well, we hope to put names and stories behind the brave faces that rely on SickKids every day. You can learn more about the families behind this series here.
The Diagnosis
When Anisa was born six weeks prematurely in 2004, she had a dislocated left hip and knee, subluxed right hip and knee, cleft palate, tilted neck, flat face and nose, along with differently-sized toes. Anisa had a rare genetic disorder called Larsen syndrome, and the now-11 year old has already undergone 10 operations at SickKids in the ongoing quest to improve her health, mobility and quality of life.
Anisa’s Family
Anisa's parents, Moe and Arlene, and her 13-year-old sister Tefaiha have been right beside her the whole time, nervously watching every step Anisa took and every setback she faced. Adding to this, Moe was also the primary caregiver for his sister, who suffered a brain injury and the family provided constant care for her until she passed away in August.
Because of Anisa's unique condition, many of the surgeries she's faced have been precedent-setting procedures. There have sometimes been procedures that didn’t go as planned with painful consequences, including two separate neck surgeries that resulted in her having to wear a protective halo. Often this has meant for some difficult decision-making for Moe, Arlene and a team of SickKids doctors that included the former Chief of Perioperative Services Dr. James Wright and colleague Dr. Martin Gargan.
Arlene and Moe explain their family's story in their own words:
The Effect On The Family
Arlene: Each day from year zero to year four it was just constantly watching her and more watching her, making sure she doesn't fall, making sure she doesn't try to walk. Because if she fell, there was always something going on with her body, or her legs, or she had a halo on her head, and we always had to be there with her playing with her or having someone there to entertain her. We'd be there to speak with her because if we neglected her by just letting her be on the chair by herself, she'd be bored out of her mind.
Did it change our world? Yeah.
Moe: In the beginning, it felt almost like we were letting down our other daughter because there was so much attention being put on Anisa. My older daughter used to complain that we’re always looking after Anisa. Which is normal, right? She felt left out. But going back and looking back at some old pictures I remember Anisa was in her crib and our daughter Tefaiha was sleeping underneath the crib to watch over her. Just those little things. They're very tight together.
Did it change our world? Yeah. Not only did it change what we did for her, it changed what I did for my sister. I had to accommodate both parties. One thing with Anisa that helped with my sister was that Anisa was very loving towards her. Whereas my older daughter was kinda scared a bit, Anisa had no limits to hug her, or play around or tell her what to do just like normal. She treated her like a normal person even though she had a disability, which was touching for me.
SickKids Staff
Moe: We can't speak highly enough of the teams there and the doctors and the nurses and support staff. It's been a great experience on that side, because they made us feel like we had input.
Arlene: Even when they put the onus on the parents [to make specific decisions], we were all collaborating together.
We're pleased with the way Anisa has developed, and continues to develop. Each day she becomes more and more independent.
Moe: It was the confidence in Dr. Wright. He laid out what he'd do, he'd say, "These are the pros and the cons." If you don't have confidence in your team and strong faith you can always say, "They messed up, they did this, they didn't do this..." But at a certain point you've got to leave it in God's hands.”
The Best Moments
Moe: We rented a cottage and we were going to do some water tubing. She had her heart set on tubing. I was like, "That's going to be hard because you can't bend your knee." And she was like, "No," she looked at Dr. Wright, and as we were leaving she goes, "Remember what you said, that I can go tubing." So he looked at her, she looked at him with tears in her eyes, then he looked at me and said, "Forget this, you can go." So then when we saw Dr. Gargan he said the same thing, he said, "Let her be a child." He goes, "Whatever happens, happens and we'll have to deal with it. But you can't put these restraints on her. You've got to let her be."
That was my wow moment, because it released me internally to say, "Hey, she's OK now."
Our Life Right Now
Arlene: We're pleased with the way Anisa has developed, and continues to develop. Each day she becomes more and more independent. But because she doesn't know her limitations she will find herself walking then having to sit in her wheelchair for a bit resting, or using a walker or using an aid to walk. Sometimes somebody needs to be with her, because she can't go to school because her limbs are in pain. But once she heals she's back on the field doing what shewas doing before.
And we're still reminding her to take it easy.
We’re also thrilled that Anisa has been chosen to serve as the 2016 Children’s Miracle Network Champion Child presented by Walmart, on behalf of SickKids.