“At times I’ve felt like I was grieving for a child that was still alive. I feel like I’m waiting on the unknown. I constantly feel like I’m watching her to see what’s coming.” 

When Mirren was first diagnosed with Cerebral Palsy, her mother, Kerin, felt completely overwhelmed. But after, came relief, as they were given support and a referral for Cerebral Palsy Scotland’s National Lottery funded Better Start Better Future project. 

Cerebral Palsy is a permanent disability that impacts a person’s mobility and muscle strength. This Cerebral Palsy awareness month, we share Kerin’s story.  
 

Getting the diagnosis has opened up a whole new life 

Our daughter Mirren is two years old. She has an older brother and two sisters, and we live in Newton Stewart.  

From birth we thought there was something wrong with Mirren. She wouldn’t settle, she didn’t like anything really. We noticed she didn’t seem to use her right side. As she got a bit older, she wouldn’t swallow or chew properly. But we kept being advised that it was because of reflux, or that some babies favour one side, or that some are slower to wean.  

When she was seven and a half months, she was eating something and I noticed she flung herself forward and her eyes started rolling. We took her to the GP and the doctor was brilliant. We were sent to Glasgow for an EEG and they diagnosed infantile spasms. She was put on medication while we waited for an MRI scan.  

After the MRI, that’s when the doctors told me what had happened. They told me she’s had an antenatal stroke and they said there’s a high chance that Mirren could have cerebral palsy and a high chance she could have autism. They said all of this would have a big impact on her development and she might never walk, she might never talk.  

I was trying to take this in myself, not expecting a diagnosis that day. I came home in an absolute mess. 

At times I’ve felt like I was grieving for a child that was still alive. I feel like I’m waiting on the unknown. I constantly feel like I’m watching her to see what’s coming.  

But getting the diagnosis was good because it’s opened up a whole new life. We understood, we had answers. And the medication made a big difference to her mood. She was like a different baby, which made it so much easier for all of us. 

My goal for the therapy sessions was to have Mirren standing 

I first found out about Cerebral Palsy Scotland through my local physio and occupational therapist. They asked me if they can refer her for the outreach sessions Cerebral Palsy Scotland were doing in Dumfries.  

I was totally amazed by the things the Cerebral Palsy Scotland team taught me and taught Mirren – I learned things I would never have thought of doing.  

My goal for the therapy sessions was to have Mirren standing. Because she wouldn’t put her legs down at all.  

Lesley and Sandra – the therapists from Cerebral Palsy Scotland – showed me how to use a bench and distract her with a toy so I could then discreetly encourage her to weight-bear on her right side and use her right hand to lean on. Because, at that time she wasn’t using her right side much at all. 

I remember the first night when we came home, Mirren started lifting her right hand and looking at it, as if to say, “Oh, ok, you’re there”, because before that she hadn’t even acknowledged it. 

We had five sessions with Cerebral Palsy Scotland – the last one was in December and in January she started standing! She started pulling herself up one day, onto the toy box. She just got up and I was like, “Oh my God!” 

Lesley and Sandra were great, they were so calm with her. They wouldn’t give up until they found something she liked and she was happy with what was being done.  

They played a big part in her becoming aware of her right side, and her doing what she’s doing now.  

I wouldn’t change Mirren for the world. She’s very affectionate. She just wants cuddles all the time. I would say she’s just such a content wee soul now considering the amount of things that she can’t do for a typical two-year-old. 

Cerebral Palsy Scotland 

Cerebral Palsy Scotland received £310,160 in National Lottery funding to continue providing support to families affected by the disability to improve their lives by building their confidence and resilience through individual and group sessions. 

For more information about the support they offer, visit their website.