Hari's story

Hari and his twin brother, Macsen, were born very prematurely at 29 weeks after a difficult pregnancy where Twin-to-Twin Transfusion Syndrome was suspected. We had to make the incredibly difficult decision to deliver early, knowing it was the only way to keep both boys safe.

Hari weighed just 2lb 11oz and spent eight weeks in NICU before coming home a month earlier than his brother. Early brain scans showed a small brain injury (bilateral cystic PVL), though at the time we didn’t fully understand what that might mean. Both boys were discharged with regular physiotherapy, and through the General Movement Assessment it soon became clear that Hari’s movements were different to his twin’s.

Those first months, both in NICU and at home were the hardest we have ever experienced. We were first-time parents trying to manage many appointments for two tiny babies who had already been through so much. When Cerebral Palsy was first mentioned for Hari, it came at a time when we felt incredibly lost.

We first heard about Cerebral Palsy Cymru through Hari’s NHS physiotherapist, and later from friends who had been supported by the charity. Hari was almost one when he had his first therapy session, and we went together as a family. From the moment we arrived, we felt welcomed and supported.

That first session helped us realise we weren’t alone. The team took time to get to know us and reassured us that we were doing our best and that it was enough. We left feeling hopeful, more confident, and part of a community.

Hari has been part of the Better Start, Better Future early intervention service, receiving support from speech and language therapists, physiotherapists, and occupational therapists. Every professional has taken time to understand him as an individual, and the focus has always been on building meaningful activities into our everyday routine using things we already have at home, something that has been invaluable with twins who need different support.

We’ve also had brilliant advice on equipment, referrals, and what to ask at other appointments to ensure Hari receives the help he needs. Their guidance and encouragement have been a constant source of support.

Hari has also attended the Let’s Move Together playgroup, which has helped him grow in confidence and explore movement in a positive, fun environment.

The service has truly been a lifeline. It has made the greatest difference to Hari and has given us hope and reassurance for his future.

When we first attended, we were overwhelmed by uncertainty and fear. Cerebral Palsy Cymru’s expertise, warmth, and community have helped us move from feeling lost to feeling hopeful. We now look at Hari’s future with far more confidence and positivity.

We cannot thank Cerebral Palsy Cymru enough. Their support is not only professional and specialist, it is compassionate, empowering, and truly family-centred. They gave us hope when we needed it most.

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!