Family carries on Pia Kanemura’s running legacy

After her daughter’s tragic passing, a Gold Coast mother will push her now-empty racer for a final time at the Gold Coast Marathon running festival. Here’s what keeps her going.

AJ Kanemura , the mother will be running to honour Pia Kanemura who lived with a neuro developmental disorder, Rett Syndrome, before passing away in May. Prior to her passing, AJ had planned to push her in a wheelchair for the half and full marathons. Picture Glenn Hampson

Vale-Pia Kanemura was a glowing fixture of Gold Coast’s running community despite being unable to run herself.

For 18 years her mother AJ and brother Kye took turns pushing her race wheelchair so she could experience the on-track adrenaline.

Tragically, last month aged 20, Pia lost her lifelong battle with Rett Syndrome - a rare genetic neurological disorder crippling movement, communication, and cognitive abilities - just shy of the family’s two-decade marathon milestone target.

Next month in her absence, the mother-son duo will take part for dual medals across the 5km and 21km categories in her honour at the Gold Coast Marathon running festival.

AJ Kanemura, the mother will be running to honour Pia Kanemura who lived with a neuro developmental disorder, Rett syndrome, before passing away in May. Picture Glenn Hampson

“Our goal is to give her a double medal. We need closure and this will be my last time pushing her. I’ll now have to learn how to run by myself. I would love to finish it with her,” Ms Kanemura said.

With the empty racer decorated with her daughter’s favourite keepsakes, she shared why the event holds a special place in her heart.

“I started when she was not even one and this was going to be her 18th year of 5kms. Over the years we did some fundraising for Rett syndrome awareness, we were always aiming for 20 years.

“Gold Coast Marathon is my goal now, I’m determined to get back, even if I have to walk. Pushing her was my motivation, I really don’t enjoy running by myself, so I don’t know what I’m going to do now. I will have to learn to run by myself.”

In her time on the course Vale-Pia was encouraged by the community and although she couldn’t say thank you due to her impairments, Mrs Kanemura said her eyes said it all.

“People would cheer for her when we were running, she was wide awake through the official photos, I will treasure those.

“That’s exactly the reason I kept running with her, with everything that was going on in her life, I thought she deserved all the cheering in the whole world. The people were amazing, all the support, every race, people recognised us. After the race, people would always come up to us and talk to us. It was a great experience.

“I will keep running and take her to the places she couldn’t go. I take running as a gift and community that she gave me. I will keep that going. That will be quite emotional when it happens.”

Returning to the track won’t be easy she said: “But I think we have to do it. Kye needs proper closure, I don’t know if he will manage it but I hope he will.”

Ms Kanemura said her children had a special and unspoken connection. Two years her senior, his pursuit of triathlons was a catalyst for Vale-Pia’s immersion in sports.

He pushed her on the run, pulled by boat on the swim and cradled her for the cycling leg.

“He definitely would have been faster by himself, but for me I’m definitely faster with her. I’m hopeless by myself, running was not my thing. I only started running when I was 47.”

She adds: “Kye and Pia were my motivation, the inspiration, seeing what they’d done I thought I want to keep that going.

“There was not much we could do together and at the same time keep me fit and healthy to take care of her. She had a good life, she’s done things most people don’t do. I think she’s achieved a lot in her short and long 20 years of life.”

Prior to her passing, AJ had planned to push her in a wheelchair for the half and full marathons. Picture Glenn Hampson

“She fought hard and proved the doctors wrong. The last day I told her I was ready when she was ready, because it was too much for her little body. She was tiny for a 20 year old. I always wanted her to stay with me, but that would have been my ego to keep her suffering for so long.

“She was in a body that didn’t work. She’s not in pain now, doesn’t have seizures, doesn’t need a wheelchair, she can pick her own favourite colours, that’s one thing I can take that she’s not in pain.”

Originally published as Family carries on Pia Kanemura’s running legacy