A young family living with stroke

 Ora's story

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The holiday season should be a wonderful time of year, especially for a young family. You can only imagine the shock for Erykah and her husband when they discovered that one of their twin baby daughters, Ora, had experienced a stroke.

 

It had been a difficult enough time for the family with their three-month-old twins in and out of hospital, but then a scan revealed that Ora had also had a stroke.

Erykah was stunned. Ora hadn’t shown any obvious symptoms. “It was really hard for us to wrap our heads around,” Erykah explained. “How could such a young baby have a stroke?”

Erykah knew little about stroke, other than the FAST advertising she’d seen. Needing to know more so she could help her little girl, Erykah discovered the Stroke Foundation online. She was quickly connected with a local Community Stroke Advisor (CSA).

“The CSA helped to give us more information about stroke and how to manage stroke with a child,” Erykah continued.

The effects of stroke are different for everyone. For a baby, the after-effects often only emerge over time, which makes for a long and heart-aching wait for parents. When Ora was around eight months old, her mother started to notice the differences between her and her twin sister, Lumen.

“Ora couldn’t sit straight like Lumen, she was always a little slumped,” said Erykah remembering that time. “We also noticed that she would only use her left hand to reach for things and her right hand would just hang by her side.” Fortunately, with the help of our CSA and the information Erykah received, she knew what to look out for and could keep an eye on Ora’s progress.

Living with someone who has experienced a stroke affects the whole family. Ora’s eldest sister, Elvie-Ella, was two years old when Ora suffered a stroke. Erykah said that it was difficult for Elvie-Ella to understand why Ora was in and out of hospital and why she was getting a lot of attention from family members. It was a lot to take in for someone so young and this type of stress is quite common with siblings, especially around birthdays and Christmas when families spend a lot of precious time together.

Again, Erykah knew what to do and how to work through it. Elvie-Ella is now almost five and truly understands Ora’s condition. “Elvie-Ella is great with Ora. She comes along to therapy classes and helps Ora to pick things up with her right hand. She’s incredibly supportive,” a proud Erykah explained.

Shortly after Christmas last year, the twins started to walk. Ora has been making fantastic progress ever since, quickly catching up with her twin sister and matching those milestone moments. The whole family are really looking forward to this holiday season.

“Ora has such an amazing personality, she’s so cheeky and she’s really driven. Having a twin has really helped her, and us too, as we’ve been able to better monitor her progress,” Erykah told us. As Lumen has grown and developed, Ora has followed in her footsteps, copying her sibling.

Although there will still be challenges for Ora as she grows, Erykah is incredibly grateful for the tools she received to help her family and ensure her daughter has the best possible life. Erykah wants to thank all those who support the Stroke Foundation so that every family in New Zealand can access the same support she received.