Amanda and Kimberly’s story

_“I have this clear memory of being in first grade and coming home from school to find the house empty, front door hanging wide open. My parents were at the hospital again, with my sister Kimberly.

I’m the oldest of four girls. Kimberly is the youngest. She’s always been sick. Kimberly’s disease, tuberous sclerosis complex, causes tumours to grow throughout her body. The disease gave her seizures, mental disability and mental health challenges, and an immune system severely compromised by the medications used to treat it.

It feels like I’ve always been looking after Kimberly, looking out for her. As the oldest, and with our parents so stressed, I naturally took on a caregiver role for all of my sisters. That childhood experience really shaped who I am today.

Kimberly is 39 now, and I’m still involved in her care. It can be a difficult relationship to manage because I know she doesn’t like feeling like I’m the boss of her. But sometimes I have to be, especially as her mental health has worsened.

“I’d love to stop being the home manager, and just hang out with my sister as a sister.” 

Kimberly calls me her ‘home manager’ and she calls our mom her ‘medication doctor manager,’ reminding us that our family relationships are complicated by these additional roles. And our mom takes her role very seriously, especially when it comes to access. There are new treatments for this disease, but the process of getting access to them here in Canada is painfully slow. Our mom founded Tuberous Sclerosis Canada so that she could fight for access, research, awareness, and a better life, not only for Kimberly, but for all those who share her condition. 

Because Kimberly still wants so much out of life. She’s so passionate about music, she taught herself to play guitar, drums, piano, and ukulele. She loves to go bowling. She wants to learn to drive, to fall in love, and to get married. But it’s hard to be optimistic about these things when her condition just keeps getting worse and worse. 

What I hope for more than anything is that one day I’ll be able to step back from the caregiver role a little bit. I’d love to stop being the home manager, and just hang out with my sister as a sister.”

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