Step By Step

Do you think your style has changed since you became a mother?
Not really. But I think when your body shape changes, you tend to look for outfits that aren’t so tight. And also because I’m still breastfeeding, I need to think about accessibility. I wouldn’t wear this jumpsuit if I go out with my kids.

Could you tell us a bit more about your older daughter, Kyra, and her condition?
Kyra was born with macrocephaly-capillary malformation, and she turns six this month. When we found out about her condition, she was one out of about 118 in the world. Currently, there are about 150 reported cases. When she was born the left side of her body was slightly larger than her right, and she had a very large red birthmark across her face. She underwent six rounds of laser treatment at four months of age to remove the mark. When she was seven months old they realised she had hydrocephalus—a build up of cerebrospinal fluid within the brain—and she had to go for a brain operation. It failed, and left her with a very major brain bleed. She had to go through three brain operations to correct the first one. Now that she’s older, she still goes for regular scans and gets as much therapy as she can. We’re just taking one day at a time.

We’ve turned to Facebook for help.
Her condition is so rare that even our specialist gets information on management guidelines from this Facebook group I found. Initially, when I first got the prognosis, I Googled it but didn’t find anything. So one day I tried Facebook. A mother started the page and she shared all the research she’d done, and the members are mostly in the United States & United Kingdom. The life expectancy for children with this condition isn’t very high, so when we see each child getting their angel’s wings it’s quite sad, but we just embrace each day as it goes. As long as Kyra wakes up happy each day, and she’s okay, that’s fine.

We know you started Kbibs, making bibs for Kyra, and for other older children who need them. What are your hopes for the brand?
I’m just happy doing what I’m doing. I just hope that I can continue as long as I can, lah. I hope people buy from me so that I can continue to feed my habit but it’s something that I enjoy doing, I never really have high hopes for it. I just enjoy the process of looking at the prints and buying the fabric and making the bibs. 

What’s one thing that you guys like to do together as a family?
We like to go to the library together. Kyra likes books, as much as she doesn’t talk or interact. At the same time, though, we don’t want our younger daughter, Bella, to feel like her mom and dad are always focusing on her big sister. She has to spend a lot of time with Kyra in the hospital, waiting at the clinic, so we make an extra effort to bring her to children’s plays and birthday parties.

You talked about wanting to travel more—what’s one place that you want to visit?
I’ve always loved London. I once spent the whole day outside the Tate Modern, on the grass, watching people and just chilling. It’s something that isn’t common for me to do, because I constantly have to move. And that was the only city that could slow me down.

Magdelene was previously seen here.