Xairoh vs INAD battling a rare and deadly disease

UPDATE 2025

Dear friends, family, and supporters,

The past year has been quite the whirlwind for me and my children. And, I thought it would be good to give you guys an update

After the diagnosis we moved to our own place. Xairoh has his own room with all the necessary equipment, such as: a medical bed, ceiling lift, wheelchair, and all his medical care supplies

Xairoh is now fully dependent on caregivers, nurses on volunteers for personal care, activities, physical therapy, and medical appointments

Unfortunately, we do not have our own vehicle which makes it very difficult to get around. Xairoh is too vulnerable for sicknesses which is why he can’t travel by public transportation. He gets very sick by getting a simple virus, and is at risk for dying because of these complications

The municipality of Zoetermeer said that they can’t reimburse us with a car, but they can help us with the adjustments to make the car suitable for Xairoh. I have reached out to different institutions for help, such as:

- Getting support from the institute for public values

- E-Mailing the mayor of Zoetermeer

- Reaching out to the children’s ombudsman

Unfortunately, without succes. The last resort I have left is to you all for help. The donations from the Go Fund Me will go partly to funding the research foundations and partly to funding a car for us. The latter will be quite the task because the car needs to be big enough to hold all of Xairoh’s medical equipments

But, together we can come along way! Thanks so much!!!

2023

Dear readers and donators; Firstly, thank you for taking out the time to read about Xairoh’s battle with a rare genetic and deadly disease. Every parent dreams of having a long and healthy future with their child. Unfortunately for Xairoh, this isn't the case. The hardest thing for us as parents is having to watch our son gradually lose his (mental) skills and movements.

Allow us to share his story with you.

About Xairoh Bennett

Xairoh was born on the 27th of August 2020 wit no complications whatsoever, during the first few months, Xairoh was known to be a joyful and charming cherub

In his first year, Xairoh achieved all of his milestones.

Xairoh would crawl to us, play hide and seek and jointly walk with us. His first words were: mama, dada and bye bye. He enjoys swimming, lots of cuddles and spending time in parks.

However, around 15 months Xairoh started facing difficulties in regards to his balance. At 19 months he stopped walking, crawling and talking. 2022 was filled with many medical exams and uncertainty, due to the fact that we witnessed the regression in our son but no-one could explain to us what was the cause for this. At 25 months Xairoh lost his ability to independently sit up straight. January 2023 we got a diagnosis. Xairoh was the victim of a rare inherited genetic and metabolic disease, Infantile Neuro-Axanol Dystrophy.The chances of getting this disease is 1 in a million.

Infantile Neuro-Axanol Dystrophy

Infantile neuroaxonal dystrophy (INAD) is a rare inherited neurological disorder caused by PLA2G6 mutations. It affects axons, the part of a nerve cell that carries messages from the brain to other parts of the body, and causes progressive loss of vision, muscular control, and mental skills. INAD is the result of an abnormal build-up of toxic substances in nerves that communicate with muscles, skin, and the conjunctive tissue around the eyes. Symptoms usually begin within the first 2 years of life, with the loss of head control and the ability to sit, crawl, or walk, accompanied by deterioration in vision and speech. Some children may have seizures.

INAD is a progressive disease. Once symptoms begin, they will worsen over time. Rapid, wobbly eye movements and squints may be the first symptoms, followed by floppiness in the body and legs (more than in the arms). Eventually, because of deterioration in vision, speech, and mental skills, the child will lose touch with its surroundings. Death usually occurs between the ages of 5 to 10 years.

There is no cure for INAD and no treatment that can stop the progress of the disease. Treatment is symptomatic and supportive.

Our goal

The funds that are being raised will go to research projects on finding/accelerating a cure/gene therapy for INAD. We will be donating to the following projects:

For more information, please visit: https://www.inadcure.org/our-research-projects/

Genetic/Metabolic Disease

Metabolism is the process your body uses to get or make energy from the food you eat. Chemicals in your digestive system break the food parts down into sugars and acids, your body's fuel. Your body can use this fuel right away, or it can store the energy in your body tissues, such as your liver, muscles, and body fat.

A metabolic disorder occurs when abnormal chemical reactions in your body disrupt this process. When this happens, you might have too much of some substances or too little of other ones that you need to stay healthy. There are different groups of disorders. Some affect the breakdown of amino acids, carbohydrates, or lipids. Another group, mitochondrial diseases, affects the parts of the cells that produce the energy.

Contact

Stay up-to-date with Xairoh his journey via Facebook

Any researchers or professors with knowledge of INAD, contact us

Do you want to start a fundraising event? Please contact us