Told by his dad, Tom

George came into our world in September 2021. From the outset it was not the straightforward delivery that we were expecting. George immediately struggled to transition, struggled to breath and his oxygen levels were low. He was immediately taken to the neonatal intensive care unit. Despite this George fought with the courage and vigour with which he has continued to this day. Whilst on NICU we noticed features that were consistent with Trisomy 21. Days later our suspicions were confirmed with karyotyping. George left hospital 6 weeks later and bar a few minor blips has not looked back since.

As parents, we know George will face additional challenges in life, but we want to ensure that he has every opportunity to reach his potential. We made a promise to George that we would do everything we could to maximise those opportunities.

Through our own research we discovered that the earlier children with Down syndrome receive specialist input from physiotherapy and speech and language therapy, the more likely it is that that individual will maximise their potential. Currently, availability for these specialist services for children with Down syndrome through the NHS is extremely limited and can only be accessed if there are specific developmental concerns, much later in a child’s development.

Whilst researching these specialist services and through the recommendation of other parents with children with Down syndrome we discovered Brainwave.

From the moment we contacted Brainwave they were keen to help. We were very apprehensive before our first visit, as George was only 4 months old, and we were not sure what to expect. We were immediately put at ease, however. We met George’s physiotherapist Mike and play therapist Nikki. From the word go it was evident that the Brainwave team wanted to tailor their specialist input to George’s individual needs. They assessed what George was capable of, set physical goals and provided a ten-point plan for us to follow over the next 5 months. They also offered remote guidance via an iPad if necessary.

We immediately got to work. Initially the tasks were difficult for George, and we felt a little demoralised. But with perseverance and persistence we started to see amazing results. George was progressively meeting his physical goals! We have returned every five months since and have followed the same simple process. George is now able to stand, cruise around furniture and we are working towards him walking.

We wanted to focus on George’s communication, and we have been working closely with George’s speech and language therapist Bethan. Bethan is fantastic and has provided lots of excellent tips to aid George’s communication and encourage George’s speech. Bethan also provides a ten-point plan for us to follow over the following five months, and George really loves communicating through song, books, and Makaton. 

We love returning to Brainwave. George loves showcasing his newly learned skills and we are enjoying seeing his progression. Brainwave day is a real highlight for us as a family and we look forward to seeing everyone.

We know George will continue to progress and grow into a brilliant, wonderful young man. It is with thanks to the amazing team at Brainwave that we can be sure that we have done everything we can to allow George to be the best that he can be.