The 6-year-old has a rare neurological disease that mixes Alzheimer’s and Parkinson’s.

A child suffering from a condition described as a combination of Alzheimer’s and Pakinson’s disease hopes for a miracle and stumbles upon him as clinical trials of a drug to treat his condition are halted.

6-year-old Leo Vauclare suffers from infantile neuroaxonal dystrophy (INAD), a condition caused by a lack of enzymes in a person’s body or a dangerous buildup of iron. He was diagnosed at the age of two.

Vauclare’s parents said the rare diagnosis only affects about 150 children worldwide. Insisting on rarity also means that few options for treatment are available.

An option for the child emerged, and the child participated in a trial on a drug believed to be able to cure his rare condition. Unfortunately, the company that handled the case went bankrupt and closed. His conditions were too advanced to re-enroll later.

Vauclare’s parents, mother Deborah and father Antoine and younger sister Eva are hopeful that something will come to heal her, possibly before she dies at the age of six, with few options left.

The disease that affects Leo (pictured) usually leads to death within five to ten years of the child being diagnosed.

“We’re not trying to say ‘poor kid’ in front of Eva,” 41-year-old Deborah Vauclare told Insider.

“But that’s something we often say because the life he lived is unimaginable.”

The family is from New York but currently lives in France. Deborah says Eve is helping her brother in some way, but she’s not entirely sure about her brother’s plight.

“He will kiss her and help me if her head falls off… She doesn’t understand why she’s 3 years old but she enjoys being with him,” she explained.

He first started showing symptoms when he was 14 months old. His family stated that he had poor balance and missed some important milestones in language development.

Therapist care and routine testing failed to detect the condition. In 2018, he did a genetic test that revealed the INAD diagnosis.

Although Leo’s parents (left) don’t know exactly why his brother is sick, he says his younger sister, Eva, who is 2 years old, is helping him (right).

Leo’s family (pictured) enrolled him in a drug trial for a potential INAD treatment candidate, but it didn’t go ahead shortly after the company went bankrupt in 2021.

The National Institutes of Health defines the condition as a rare neurological disorder that affects the axons of the brain.

It causes the affected person to gradually lose sight, mental ability and muscle control, so it is compared to Alzheimer’s disease and Parkinson’s disease.

The disease usually occurs in the first two years of a child’s life. The underlying causes are unknown.

Also, there are no treatments or treatments available that can slow its progression over time.

“We thought how could this be. … How can our child – or any other child – have this life that isn’t really that big?’” Deborah said.

Deborah was pregnant with Eve when Leo was diagnosed with INAD, and the family is worried that their unborn child will also be affected, with doctors estimating a 25% chance.

“I was a total shipwreck… I couldn’t sleep. I couldn’t eat and felt nauseous and nervous all the time,” she explained.

Testing before the home birth showed she would likely be healthy, though a relief for the family.

The family joined forces with the INADcure Foundation to find a cure for the condition.

The family set up a foundation for Leo, hoping to raise money to develop a gene therapy treatment that could halt the progression of INAD.

Leo’s mother, Deborah (center), fears that even if treatment is developed, it will be too late to save her son.

Later, the Bisous for Leo campaign – kisses for Leo in French – was launched. In the months following his diagnosis, the boy also signed up for a drug trial for a promising treatment candidate for the condition.

In 2021, the company executing the case faced financial difficulties and filed for bankruptcy, closing the case.

When his family tried to enroll Leo in a follow-up study, he was told that his condition had deteriorated so much that the medication would hurt him more than it would have helped.

His family says he was barely aware of his surroundings. She needs a feeding tube and uses a contoured seat that supports her body and keeps her upright.

The foundation likely needs $7 million to launch a new gene therapy treatment for the condition, but even if the money comes, it may be too late for Leo.

“They say it will be ready in 18-24 months… Will it qualify for a trial? 18-24 months?’ said Deborah.