A carer has launched an appeal for the public to help bring ‘a whole new aspect’ to the life of a boy suffering from an incredibly rare condition.

Ann-Marie Haggar, based in Enham Alamein, is the full-time carer for Isaac Blake, a seven-year-old who has Allan-Herndon-Dudley syndrome.

The condition, which only affects males, is a rare disorder of brain development that causes moderate to severe intellectual disability and problems with movement.

Due to the condition, Isaac has “the physical functions of a newborn baby” and is registered blind, as well as having to be given oxygen and fed through a tube to keep him alive.

“He’s been listed under palliative care for a long time,” says Ann-Marie, “and was not expected to reach his third birthday.”

She recalls one occasion where she and Isaac’s guardian, Maxine Rochester, were waiting for “a call that he would die.”

“A consultant and nurse were present,” she told the Advertiser, “and watching every breath that they expected to be his last.

“But a few days later, he was up and sucking on a chocolate button. He keeps surprising us, and is much stronger than his tiny body would lead you to believe!”

Due to Covid-19, trips out of the house have “become almost impossible as he is so vulnerable,” with his specialist pushchair only suitable for trips into town. As a result, Ann-Marie and Maxine are hoping to raise money for an all-terrain buggy that will allow him to take trips into the countryside.

“There’s so many local walks around here,” says Ann-Marie. “They will provide Isaac with enhanced stimulation and happiness. He can see the difference between light and dark, so the movement of trees can be visible to him as the light passes through them.”

As Isaac has limited muscle control, the chair needs to be able to support his head and body, as well as carrying all the equipment and medicines Isaac needs. A suitable chair has been found, which Ann-Marie is now trying to raise £3,000 towards.

“I know it’s a difficult time,” she said, “especially with Christmas coming up, but I hope that as Isaac has been so strong, it will be nice to give something to him.”

Anyone wishing to donate to Isaac’s new buggy can click here to head to the fundraising page: https://www.gofundme.com/f/isaac039s-adventures