Our November warrior Nell – finding therapies to unlock her potential.

Nell’s story is written by her mum Amber and shows how hard parents work to achieve the best outcomes for their warrior children. Amber’s vision therapist Jordan kindly gave a talk for UKIST about cortical visual impairment which can be found here https://www.youtube.com/watch?v=ZUo4yfpOfSo&t=37s “Babies do weird and wonderful things” was the response of the consultant, […]

Read More…

Our October warrior – Gene

Gene’s story is written by his father, Ryan Me and my fiancée Charlotte wanted to share our little man’s story, Gene Gardner. It was November 2020, Gene had been at Charlotte’s mum’s that afternoon, as we had been for some food. When we picked him up her mum said that he had been doing some […]

Read More…

UKIST family day at the Childrens’ Adventure Farm Trust

For the first time since Covid disrupted our plans, we were able to get some of our UKIST families together at the wonderful Childrens’ Adventure Farm  Trust in  Cheshire. It was a fantastic day for all the families who attended and grateful  thanks to the CAFT staff for ensuring everyone was able to participate. They […]

Read More…

July – celebrating achievements

Every month we have a special thread in our closed support group to share and celebrate the milestones (and inchstones) that our children have achieved. Today they were just so lovely I asked for permission to share some. These little warriors just quietly keep on trucking despite their challenges. Heartwarming!     It’s hard to […]

Read More…

Our May warrior – Violet

When we found out we were pregnant with our second child we were delighted! We had always wanted a sibling for our 3-year-old son Ronnie. The pregnancy progressed as normal, with no causes for concern, until we attended a routine scan at 36 weeks. The sonographer noticed something unexpected on our daughter’s brain. The ultrasound […]

Read More…

Top