Agony of the mother after the loss of her daughter, 2 years old, with a rare neurological disease

Doctors are unable to say how much time he has left to live.

Each year, infantile latte disease is diagnosed in up to two children, including five to ten in the UK.

His mother, Vicky Cunningham, 34, said, "Tomorrow is a miracle for Mirryn. We have no idea how long we have with her and as a mom, it is so difficult to live with.

"We must enjoy every moment with her while we can."

Since 2017, MRIs have shown a mbadive loss of brain tissue to the point that Mirryn's brain is twice as small as before.

Babies born with this disease often develop normally during the first months of life, but towards the end of their first year, developmental progress begins to slow down.

The symptoms of Batten's disease are caused by the accumulation of fat in the body tissues.

Mirryn was born at 31 weeks and two days, weighing a tiny 3lb 2oz.

Mirryn was diagnosed with delayed myelinization, a nervous system problem, in 2017, but Vicky insisted on a second MRI in January, revealing the severity of her brain's deterioration.

Uphall's mother of two children, West Lothian, Scotland, added, "You know, when your mother can not keep her head up and do not touch things instinctively, it's more than that.

"All I remembered about the day of his diagnosis was the shocking numbness that seemed to freeze that horrible moment and all the emotions of the race as I fell on my knees in disbelief and horror.

"I would advise all parents to trust their intuition.

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"Although, unfortunately, there is no cure for this disease, at least I now know exactly what I have to deal with and Mirryn can access the right care."

The family recently appealed to GoFundMe to raise £ 2,500 for a special seat designed to improve Mirryn's posture and break their target.