Every day throws up a new challenge for Sebastian Collins (5) and his family through no fault of their own.
Diagnosed with a rare genetic disorder called galactosaemia which means sugar in the blood when he was just 15 days old, Sebastian’s life became even harder when he was found to have moderate to severe autism at the age of two.
But with round-the clock supervision from his family and the dedication of staff at Gosberton House School for children with special needs, Sebastian is facing life head-on.
His mum Louisa Collins (32) said: “Sebastian was quite poorly as a baby because of the galactosaemia and he could have died before they found out what was wrong with him.
“He was actually taken to King’s College Hospital, London, with liver damage because he was fed cow’s milk and it was only then that his condition was picked up.”
Sebastian is on a strict diet of sweetcorn, homemade spaghetti bolognese, lamb, powdered soya milk and water but his autism presents problems of a different kind.
Louisa said: “Sebastian’s behaviour is a massive challenge for us because of his autism and myself, my other son Jack (12), and his dad and most of our family have to be involved in looking after him.
“At one time, Sebastian was an unhappy child who was never big on eye contact or being touched.
“He was obsessed with me being his mummy which has been quite hard on everybody else.
“Sebastian doesn’t sleep through the night, he can be very aggressive and he doesn’t understand the concept of danger.
“He can’t go to birthday parties because people don’t understand his condition and I’m afraid of people offering him food that might kill him.”
Louisa thinks her son’s behaviour would have been worse without the controlled and more orderly environment at his school.
She said: “Sebastian’s behaviour at school is much better that at home because it’s much more structured and with the help of his teachers, my son has come on a lot.
“But there’s still a long way to go and we try to do as much as we can with him.”
Sebastian’s brother Jack is a registered carer and Louisa admitted that he’s had to make sacrifices for his younger brother.
“Jack misses out on a lot of things but he’s very supportive like the rest of my family,” Louisa said.