Benji was born with Noonan syndrome, a rare genetic condition that affects him in many different ways. He is so clever and always so happy, it's sad to see that his body lets him down. He was diagnosed at 10 months old, they had been testing since birth as they knew he was a poorly boy. He has had 6 surgeries to correct problems with his stomach, testes & palate. What he goes through and copes with is incredible and the way he comes out of the other side. In 2017, when undergoing palate reconstruction, we thought we were going to lose him when he developed a haematoma in the roof of his mouth that swelled and blocked his airways. He was rushed back to theatre and they made a drainage hole to relieve it. The feeling when I got him back is indescribable. To this day that has been the worst experience of my life.
We now are 6 months into mainstream school with a full 1:1 doing part time and he is nearly 6! With all of his therapies and specialists he has come a long way and continues to amaze us all. He is my little hero.