A brave toddler born with 20 per cent of his brain MISSING has been praised by medics as a “miracle’ for defying their predictions.
Little Kaiden Daley, aged 14 months, has been diagnosed with epilepsy, cerebral atrophy and right side hemiplegia – paralysis of one side of the body.
Cerebral atrophy affects the brain and means a reduction in the size of the brain cells.
However, parents Amanda Harvey, 45, and Orrett Daley, 46, were unaware he had the conditions until he started having seizures.
Kaiden was just eight-months-old when he experienced his first seizure in September 2018 – known as focal absence seizures.
Absence seizures cause lapses in awareness which sometimes are mistaken for daydreaming and may not be detected for months.
Mum-of-three Amanda said: “It was awful to watch him fit for the first time and it still is absolutely awful.
“It was very scary when it first happened, because non of us knew the damage to the brain until he started having seizures.
“I was feeding him at 5.30am when he went floppy and his eyes rolled to the right side, he was completely absent.
“Very scared, I shouted for my son, because my Orrett was working a night shift, and we rushed to hospital where they admitted him and believe he had a seizure – they discharged us the following day but we had to go back for further tests.”
However, 10 days later Kaiden suffered another seizure and was rushed to hospital but was admitted for six days where he had tests including heart, and brain examinations.
An EEG scan came back with abnormal brain activity and an MRI came back showing substantial 20 per cent of brain loss.
Since September he has suffered five epileptic and is regularly attending appointments at Ipswich Hospital, in Suffolk.
Amanda, of Ipswich, Suffolk said before he was having the fits she “noticed he didn’t use his right arm hand much and we just assumed he would be left handed.”
She added: “He is very very knowing as well.
“We are still waiting for the reason why it has happened. We don’t know what has caused this.
“Consultants think he may have had a stroke while inside me mid trimester pregnancy but not confirmed yet.
“We just have to take it stage by stage.
“If he gets a cold or start teething, that will often trigger a seizure off.
“He takes medication for his epilepsy to control it, but he is drained from his energy when he has a seizure.”
Kaiden cannot crawl or walk and finds it difficult to use his right arm but Amanda said he is “very determined” young boy who has defied the odds.
Amanda, who cares for Kaiden full-time, says his toes on his right foot are clenched and is right leg is stiff – which makes it difficult for him to walk.
She added: “He has started to open up his hand a little bit, but he mostly rolls to get where he wants to go.
“He can walk a tiny bit if we are holding both hands but that’s about it.”
Doctors have been surprised at how much Kaiden is able to do with such a severe condition and says it is a positive step forward.
Amanda said: “His consultant keeps saying it is amazing and they think he is going to be very intelligent.
“He still is very aware and very nosey. He babbles a lot, it’s him trying to talk – he is such a chatty, social little boy.
“The only time it really hurts me is when his friends are off running around and playing and he can’t do that yet. That’s quite sad to see.
“He is a very determined loving sweet little boy that we want to give every chance to have as normal life as possible.”
Amanda is now trying to raise funds to help get Kaiden treatment called CIMT therapy, based in Manchester, to help get his right arm and hand moving.
The treatment would restrict Kaiden’s usual of his good arm so that he learns to use his right arm for three hours a day on specialised activities.
They have set up a Just Giving page under the name of Amanda Sinclair to try and raise the £7,000 needed to pay for the treatment.
She added: “It will help him to play with toys using both hands, eat food and hold bottles, at present its like he doesn’t even realise he had a right arm and hand.
“He is the sweetest, happy, content little boy.
“We want to give him the best life we can with his disabilities.”