A four-year-old boy who forgot how to smile due to a rare disorder has got his grin back after his symptoms were cured – by MILK.
Sonny Little is one of just 25 children worldwide with a chromosome deletion syndrome known as 2Q24.3.
He was born healthy but started suffering fits aged three months which grew more severe and frequent until he was having up to 30 a day.
The tot would turn blue, stop breathing and shake violently for between two and 20 minutes while mum Kelly Davies, 34, and dad Martin Little, 32, watched on helplessly.
Then, in 2014, Sonny had a devastating 14-minute seizure which left him unable to crawl, laugh, eat and saw his brain ‘forget’ how to smile.
It wasn’t until this time last year that the tot was referred to a nutritionist who started him on a special ketogenic – high-fat and super low carb – diet, of just milk.
Now he drinks two pints of milk a day and the high-fat, low carb plan.
His seizures have almost completely stopped and he is showing signs of development again.
And incredibly his mum Kelly says Sonny is now responding to her again and – has relearned how to smile.
The retail worker, of Trowbridge, Wilts., said: “The first months of Sonny’s life were perfect and it was incredible, and then our whole world just collapsed.
“Before, he was able to say ‘mumma’ and hold things like teddies and was just learning how to commando crawl. He used to roll over and laugh and make noises.
“Then he lost everything. It totally stunted his development and that was absolutely devastating for me and my partner.
“Sonny didn’t smile for almost two years and it broke our hearts.”
Mum-of-two Kelly, who also has a three-year-old son, Rylee, with Martin, a mechanic, added: “The improvement since he started the new diet has been absolutely massive.
“He smiles at me now, and every single time it brings a tear to my eye.
“It is absolutely amazing. It is a miracle for us.”
Sonny was born with a 2Q24.3 deletion, a rare genetic condition in which a small piece is missing from one of the body’s 46 chromosomes.
The missing material includes genes which are important for normal development and the absence often causes seizures.
It wasn’t until he had his first fit at three months that doctors realised something was wrong, but they couldn’t pinpoint what until a year later.
Even then they struggled to treat it because epilepsy medication was ineffective, and in 2014 Sonny suffered the life-changing seizure that stole his smile.
Then last year Sonny was referred to Victoria Bittle, a dietitian at Bristol Children’s Hospital, and everything changed.
She suggested trying him on an extremely high fat and low carb ketogenic diet, which forces the body to burn fat for energy in a process called ketosis.
It’s not known exactly why but the diet is known to curb seizures in children – and it worked for Sonny.
The toddler, who is peg fed because he can’t take food orally, drinks two pints of multifibre KetoCal milk every day, 200ml every four hours – and nothing else.
Over the weeks since he began the diet his seizures became less frequent and now he can go two months without having one.
Dr Peta Sharples, consultant paediatric neurologist at Bristol Children’s Hospital, said: “Sonny forgot to smile because the signalling pathways within the brain that would normally underpin his ability to do this were being interrupted by frequent seizure discharges.
“When infants develop a severe seizure disorder like Sonny’s, they sometimes regress and lose abilities they had previously acquired.
“We think that this occurs as a result of the abnormal electrical discharges associated with the seizures interfering with brain functioning, including memory.
“This can lead to regression as well as slowing developmental progression.
“We think that Sonny’s development stopped because he had developed seizures.”
Victoria Bittle, the lad’s nutritionist, added that the new diet means Sonny’s quality of life has “significantly improved”.
She said: “Seizures were reduced by 70 per cent and Sonny became more alert, mobile, communitive and interactive with the family.
“He has been on the diet for a year and has not had one hospital admission since starting the diet.”
Overjoyed mum Kelly said that Sonny is now smiling and laughing again, and last month he said, ‘no.’
“Before, if you called his name you wouldn’t get any response but he is more alert now and he will look at you when you speak to him,”
“The doctors can’t tell us what the future holds but the less seizures he has the more he can develop.
“It feels like we’ve got our baby back.”
Martin added: “We tried so many things but they were all dead ends, and then we found out about the ketogenic diet.
“It has been amazing. Before, we were spending our entire lives in hospital and we didn’t feel like a family.
“Now we spend so much time together. It has changed everything.”
