Future is Uncertain for Australian Boy with a Neuromyelitis Optica

By Natalie Homan from In The Cloud Copy

Theo Thomas of Secret Harbour, Australia, may be a shy, soft-spoken 8-year-old, but he loves racing his motorcycle in his town’s Lightweight Motorcycle Club. It was during a race in November 2019 that the first signs appeared that something was wrong with Theo’s vision. After his first race, he told his mother, Christina Thomas, that the vision in his left eye was blurry. Mrs. Thomas assumed that his goggles had gotten smudged, so she wiped them clean and sent him back out to ride. However, Theo continued to struggle seeing clearly on his remaining races that day.

A few days after the motocross event, Theo’s teacher called Mrs. Thomas, concerned that he was unable to see the whiteboard despite being in the front row and only a few feet away. Over the next couple weeks, doctor visits, blood tests, and an MRI confirmed that Theo has neuromyelitis optica (NMO), an incredibly rare and potentially life-threatening disease that affects only a quarter-million people worldwide. In fact, Theo is the only boy his age to have been diagnosed with NMO in Australia and New Zealand.

What is NMO?

Neuromyelitis optica, also known as Devic’s disease, is an autoimmune disorder where a person’s immune system attacks the outer surface of specific cells called astrocytes. Astrocytes are a crucial type of cell in the nervous system, and for reasons that are not entirely understood, damage to the astrocytes leads to demyelination, which affects myelin, a protective outer covering of nerve cells. Without a healthy myelin coating, which functions much like the insulation on electric wires, signals from the brain cannot travel easily across nerves.

In NMO, this damage is especially bad on the optic nerve and spinal cord. As in Theo’s case, this can lead to vision loss. It can also cause paralysis, another symptom that Theo has been dealing with in his right arm.

What Does the Future Hold?

The prognosis for those diagnosed with NMO is not promising. There is currently no cure, and Theo’s body doesn’t tolerate the steroids that are the most common treatment for the symptoms of NMO.

Theo’s family realizes that this diagnosis might mean that Theo will not live the long life they had imagined for him. With NMO, it is difficult to know if there will just be a single attack or if attacks will reoccur in the future. NMO with recurring attacks is the most common form of the disease. These attacks are often followed by a period of partial recovery, but relapses can happen at any time and with increasing severity. Theo’s doctors don’t know if his NMO will recur or not, but they say that they should know within a couple of years.

Theo’s parents made the difficult decision to close down their family-run business so that they can devote all the time they need to his care and frequent appointments. Despite doctor’s visits and tests, he doesn’t complain. Against the odds, Theo has recovered 50% of his vision, and his doctors have told him he can go back to motorcycle racing as long as he feels comfortable and stays safe. No one knows what the future holds, but Theo’s family is holding on together and doing their very best to help him make it through each day.

Theo’s family has set up a GoFundMe page to help cover all the expenses relating to his care.

Check out the original story here.

 


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