Max was diagnosed with Bainbridge-Ropers Syndrome, a rare mutation of the ASXL3 gene, causing global development delay, hypertonia and feeding issues. Initially, Max’s diagnosis was a huge shock for his parents, who were scared for the future and uncertain what Max’s outlook would be.
When Max began at the centre he was reluctant to push himself to sit up and could not move himself along without support. His mum, Holly, believed that he could do more and that he just needed the right support. A turning point in her journey was their initial assessment at the charity.
“Istvan told me that I was right to be pushing Max. He said that I was doing a great job, and he could see that. It meant a lot – Max has gone from strength to strength and that’s because Istvan pushes him and can see what he’s capable of.” – Max’s mum, Holly
Max enjoys conductive education and physiotherapy where he can learn to reach his full potential. In the past 12 months alone, Max’s parents have seen a great change in him as he has become more determined and inquisitive. His mobility is improving, and he is more interested in playing.
Whilst he still cannot crawl, Max has learnt to shuffle along on his bum and is beginning to be better at baring weight. He is more alert and present with his cognitive awareness and development improving.
“Dame Vera Lynn Children’s Charity has made a huge difference to Max and to our family. I’m so grateful that this amazing charity has this centre and helps these families.”– Max’s mum, Holly
