Amber's story
Amber's story
Amber is one of the babies referred to our specialist early intervention service and Family Support Programme. Her mum, Ashleigh, shares her story:
Amber’s journey began far earlier than anyone expected, born prematurely at just 26 weeks she spent the first 12 weeks of her life in Singleton Hospital. Those early days were turbulent, overwhelming full of emotion, fear, and uncertainty. On day two we were told Amber had suffered a grade 4 bleed on the right side of her brain, the most severe level possible. Just ten days later, we were dealt another devastating blow that cysts had also formed on the left side of her brain.
We were told to prepare for a future shaped by cerebral palsy, one that might include walkers, wheelchairs, and many unknowns. It was the kind of news no parent is ever prepared to hear. We felt lost, scared, and desperate for reassurance that our little girl would be okay.
During our time in hospital, I found myself constantly searching for stories from other families walking a similar path, someone who could offer comfort and hope. It was then that a wonderful occupational therapist on the ward mentioned a local charity that supported babies likely to have cerebral palsy. Immediately I went online and filled out the referral form, I didn’t know if there was a waiting list and I couldn’t bear to waste a single moment.
To my surprise, I received a quick and warm email back, they had noted Amber’s information and reassured us that once she was discharged, we could get in touch, and they would invite us to meet the team.
As soon as Amber left hospital, I sent that email and within days, I received a call from Natasha, Cerebral Palsy Cymru’s Family Support Coordinator. I’ll never forget that first conversation, Natasha spoke about her own daughter’s journey with cerebral palsy, and hearing from someone who had walked the road we were about to begin brought a sense of comfort I had been searching for since Amber’s birth. Even before meeting anyone in person, I knew we had found the right support, and I felt connected to the charity immediately.
Our first session took place when Amber was around four weeks corrected age, we met Gosia and our family coordinator at the time, Glenys. I remember arriving overwhelmed and exhausted, unsure of why Amber seemed so unsettled and uncomfortable. For the first time since she was born, I felt truly heard, Gosia carefully watched Amber and noticed her severe reflux, something we’d been struggling to understand. After this, we were able to speak with her consultant, and Amber was prescribed medication that made an incredible difference to her comfort and wellbeing.
For over a year, Gosia has been by our side, supporting Amber through every milestone, big and small. Everything she has achieved is thanks to the outstanding support of Cerebral Palsy Cymru. Gosia has taught us so much, always listening, always offering expert guidance, always going above and beyond for our family. We are forever grateful.
Through the Better Start Better Future programme, Amber has thrived. The therapy sessions have been invaluable. As a parent I often look ahead, hoping and pushing for the very best for Amber and I’ve never once been discouraged, only supported and empowered. Every interaction with Natasha brings joy and reassurance, her positivity, shared knowledge, and her lived experience as a parent of a child with cerebral palsy makes her support incredibly meaningful.
We’ve also had the chance to attend the monthly Better Start playgroup, a small nurturing space full of activities, ideas, and interaction for our babies. Most importantly, it’s a place where we’ve met other families who understand the unique joys and challenges of raising a child with cerebral palsy. Those connections have brought us even more comfort and strength.
Amber’s story is still unfolding, but because of the help and therapy from Cerebral Palsy Cymru, she’s writing it with confidence, support, and endless love behind her. We are endlessly grateful for everything the charity has done and continues to do for our family.
We are currently participating in our Big Give Christmas Challenge, with just 7 days to raise £30,000 to help sustain and grow our critical family support programme, which provides emotional, practical, and mental health support for parents like Ashleigh.
To make a donation, and get it doubled at no extra cost to yourself, please click the following link: Make a donation!
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Cerebral Palsy Cymru is a registered charity in England and Wales 1010183. A company limited by guarantee. Registered company in England and Wales 02691690. Registered address: Cerebral Palsy Cymru, 1 The Courtyard, 73 Ty Glas Avenue, Llanishen, Cardiff, CF14 5DX.
