What is INAD? Boy, 6, diagnosed with rare terminal disease that is a mix of Alzheimer's and Parkinson's
Leo's mother Deborah revealed that Leo has lost awareness of his surroundings, needs a feeding tube and uses a molded seat that supports his body
A boy who is only 6 years old is suffering from an extremely rare neurological condition called Infantile Neuroaxonal Dystrophy (INAD) which doctors describe as a cross between Alzheimer's and Parkinson's. There are only 150 children worldwide who have been diagnosed with this condition. Leo Vauclare's family decided to speak out about some important aspects of their life that affect them on a daily basis, and how Leo's 3-year-old sister is his caretaker.
Leo Vauclare was diagnosed at the early age of 2 but started showing signs of the rare condition when he was merely 14 months old. He missed some crucial speech development milestones and had poor balance. The Vauclare family includes Leo's father Antoine, his mother Deborah, and his lovely sister Eva. Deborah told Insider that little Eva is like Leo's caretaker. At the age of 3, she doesn't understand the complexity of the situation or that his brother is battling a life-threatening disease. She said, "We try not to say 'poor boy' in front of Eva. But it's something we often say because the life that he lives is unimaginable." Currently living in France but originally hailing from New York, the family explained how Eva takes an active role in Leo's life, " 'She'll kiss him and help me if his head falls... she doesn't understand because she's only 3, but she likes to be with him." INAD is a condition that has no known cure as of now.
Earlier, no routine testing could diagnose the condition. It was only in 2018 that Leo took a genetic test and was diagnosed with the disease. While its main causes are unknown, it is said to appear in the first 2 years of a child's life. Leo's mother continued, "We thought, 'How can this be?... How could our child — or any child — be given this life, which is really not much of a life?" The family is hoping for a miracle.
What is INAD?
INAD, Infantile Neuroaxonal Dystropy, is caused by missing enzymes in a person's body or a dangerous build-up of iron. The National Institutes of Health explains that INAD is a rare neurological disorder that affects the brain's axons. Axons are the part of nerve cells that carry messages from the brain to other parts of the body. The affected children slowly lose their vision, mental skills, and muscular control, hence drawing comparison to Alzheimer's and Parkinson's. Moreover, this condition is an 'autosomal recessive disorder,' which means that both parents must be carriers of the gene that causes INAD to pass it on to their child. It is also confirmed that there is no cure for INAD and no treatment can stop the progression of the disease.
When Deborah was pregnant with Eva, Leo was diagnosed with the condition which instantly struck fear into their hearts. They thought that Eva would also be affected by the same disease. Deborah talked about the same saying, "I was a complete wreck... I couldn't sleep. I couldn't eat and felt nauseous all the time from nerves." The initial tests, while Deborah was still pregnant with Eva, showed that she would be born healthy which was a relief for the family. The family has since joined the INADcure Foundation to deal with this dreadful situation.
Is Leo going to get better?
Months after Leo was diagnosed with the condition, he was enrolled in a drug trial for a promising treatment. However, the company responsible for the trial filed for bankruptcy in 2021, halting the trial. Following this, the family tried to enroll Leo in a follow-up trial but were informed that his condition has worsened to the extent where the drug would hurt him rather than help him.
Deborah revealed that Leo is barely conscious of his surroundings anymore, needs a feeding tube, and uses a molded seat that supports his body that keeps him upright. She said, "They say it's going to be ready in 18 to 24 months ... will he be eligible for the trial? Does he have another 18 to 24 months to live?" The family needs to source around $7 million to launch a new gene-therapy treatment for the condition before it's too late for Leo. All this while, a latent campaign that goes by the name 'Bisous For Léo' (Kisses for Leo in English) is active.