Hailey

Kathryn continued speaking on Hailey’s progress with ESIP saying “there were lots of things she wouldn’t do, she didn’t like touching things, turning book pages or having baths, now she has no problem with any of that.  

ESIP has shown me lots to help her progression, we’ve used lots of charts, even sign language so she can communicate with us.  

She uses interactive methods like charts with Velcro, and is constantly surprising us with skills she has picked up and retained from her sessions,” says Kathryn. 

“Hailey has seen a great deal of improvement, she wasn’t walking, she couldn’t weight bare on her legs.  

One day she just started walking, and everything progressed from there in less than 3 months.  

She wasn’t able to make noises or produce any form of speech, now she can run around, and she is making noises and communicating better with us,” says Kathryn.  

Kathryn gave birth to Hailey prematurely but didn’t notice anything abnormal other than her struggles with feeding and reaching weight milestones.  

At a checkup she needed checks with an Ear Nose and Throat specialist, resulting in Hailey needing grommets.  

Whilst visiting Perth Childrens Hospital to discuss this, the Speech Pathologist on duty saw Hailey and was concerned, rushing her through as a priority one.  

She was then linked with services to access and was consistently monitored.  

In October of 2022 Hailey was rushed to hospital in a severe condition, something no mother ever wants to face.  

Kathryn describes it as the day Hailey “lost herself. She wasn’t doing well, she was in a severe condition, and I was asked multiple times if I wanted her to be resuscitated.” 

She was put into the Intensive Care Unit and suffered seizures to 10 minutes long, over the course of a week. She didn’t come off her medication well and the monitoring was showing that there was an underlying issue. It was an uncertain time,” says Kathryn. 

Hailey was then referred to Rocky Bay where Kathryn agreed to start without hesitation.  

 “Yes ,Rocky Bay, send us there.  I didn’t need to look elsewhere, I knew people who had previously accessed services there, I’d helped out for them when I was younger, I felt comfortable saying yes and I’m glad I did,” says Kathryn. 

The results to her genetic testing and MRI brain scan came back 8 months later as inconclusive.  Her paediatric geneticist didn’t believe the results and got in contact with a Melbourne hospital, where Hailey completed a test via mail and waited until November for the results. 

When the results came back in November the family were shocked.  

 “I thought it’d be a more common diagnosis. Without the ESIP program I’d be very stuck, I’d feel isolated throughout, I wouldn’t have thought she could be who she is right now. It’s highly recommended,” says Kathryn. 

Kathryn has found great support in the online community, speaking on the importance of connecting with those experiencing similar daily challenges.  

“The online community that we built, helps get through daily challenges, and suggestions on the best way through them.   

It will be good to connect in real life with those in the KAT6 foundation conference which is being held this year,” says Kathryn 

“We don’t know her future, but I hope things progress in the world that help people living with disabilities or rare conditions.  

I hope she has a somewhat an individual and independent life. 

There are so many types of disabilities, it’s important to understand some have one and others have more complex ones that have overlying ones too.  

It’s important for people to understand the concept that if you have a disability, you are like everyone else.  

You have challenges like anyone else, you just need some extra support it’s nothing to be ashamed of, I hope all the bullying and stigmas stop,” says Kathryn. 

Kathryn urges all parents and carers to speak up if something is wrong saying, “I hope all parents or carers speak up if they think something is wrong, even if it doesn’t get found, stay persistent.  

I knew something was wrong with Hailey, I know her better than anyone else, I kept pushing even though the results didn’t show anything.  

Without that persistence I would’ve found out years down the line and things would be so different,” says Kathryn. 

For more information on Rocky Bay’s Early Start Intervention Program and eligibility, those interested can click here or email Early Start Intervention Program Coordinator, Cristina Lee, at [email protected].