A BLAKEVIEW family is looking to raise funds for its two-yearold son to head to the United States for treatment of an extremely rare disease.

Blake Fechlie was diagnosed with alternating hemiplegia of childhood (AHC) – an uncommon neurological condition of which he is the only known sufferer in South Australia – in February.

The disease affects one in one million children and is characterised by reoccurring “episodes” of temporary paralysis to one side of the body.

For most of Blake’s life he was wrongly diagnosed with epilepsy, but his family were sceptical of the diagnosis as his “seizures” did not match those typically seen from epilepsy sufferers.

Blake’s mum, Ali Fechlie, said an “episode” involved an extended time of paralysis of Blake’s body, with shorter “attacks” in between, which were similar to a seizure.

“These episodes can last for differing amounts of time; (only recently) he had three that were a couple of minutes long,” she said.

“Within episodes are these attacks where his eyes go crazy, he gets dystonia (muscle spasms) and becomes really distressed.

“In January he had a 20-day straight episode, for four of those days he had paralysis of his entire body, he couldn’t hold his head up or sit up.

“We ended up in hospital because he couldn’t swallow, he had to be fed through a tube for four days.

“The only thing that can help these episodes is sleep; you just have ride them out, which is probably the hardest part.”

Blake’s condition has led to him being developmentally delayed – he can’t talk or walk yet, and needs to have his sleep prioritised to control his condition.

It is common for children with the disease to later develop intellectual disabilities and other neurological disorders.

Treatment options for the Fechlie family are limited in Australia, with a visit to a multidisciplinary AHC clinic in North Carolina, in the United States, being Blake’s best chance of leading a more  comfortable life.

“There’s actually a documentary about the disease called ‘Human Time-Bombs’,” Mrs Fechlie said.

“They call our kids human time-bombs because you just never know when they’re going to have an episode.

“We think Blake’s been having episodes for 50 per cent of his life, that’s not good enough for us.”

The family are raising money to take Blake to the overseas clinic through a GoFundMe page.

You can donate to Blake’s cause at gofundme.com/blake039s-journey-to-the-ahc-clinic.