Mason's Story: Living with a rare disorder

·3 min read

Mason Galambos was born on August 12th, 2016, to Brighton residents and parents Jared and Alicia Galambos.

A few months after his birth, it was noted that Mason was unable to hold his head up. After receiving exome genetic testing, Mason was diagnosed with Allan-Herndon-Dudley Syndrome in January of 2018.

Allan-Herndon-Dudley syndrome is a rare disorder of brain development that causes intellectual and physical disability in affected children.

As Mason grows, he experiences debilitating muscle spasms and seizures. The 4-year-old boy was recently fitted with a feeding tube due to difficulty swallowing and requires attention and support around the clock. As parents Jared and Alicia exhaust themselves to care for Mason, the prevalence of Allen-Herndon-Dudley syndrome is still unknown.

Mason suffers from epilepsy and is non-verbal with low muscle tone, which prevents him from sitting or walking. After having Mason, Alicia was unable to return to work as he needs constant care and monitoring. Alicia provides 24-hour care for her son as he is unable to move well or feed himself. Mason has several seizures a day and requires monitoring at night as Mason does not sleep well due to struggling with swallowing secretions.

“My heart breaks for these parents,” said Jared’s aunt Kathy Jackson. “We do whatever we can financially and physically for them, unfortunately, it’s not enough; we can’t take away their pain or exhaustion.”As Jared and Alicia continue to care for Mason, public and private medical coverages along with Jared’s employer benefits don’t cover all of the expenses needed to provide for Mason. The family is anticipating costs of $100,000 or more to give Mason what he needs to live a happy life.

One of the largest upcoming expenses for the Galambos family will be incurred by renovating their home to be more accessible, or moving to a more accessible home, as well as purchasing a vehicle that is suitable for the specialized transport that Mason requires.

Last year, Mason underwent surgery for G-tube feeding, dental and abdominal surgeries, as well as therapeutic Botox to help with increasing muscle spasticity. As Mason ages, his condition will continue to wear on his body and he will require additional procedures and medications.

Mason required a custom wheelchair to support his body, a standing frame to facilitate weight-bearing, custom orthotics and specialized bath seating. As he continues to grow, each of these aids will need to be replaced, and he will always need supplies for his feeding pump.

Despite his condition, Mason is an overall happy child who loves snuggles, tickles, twinkling lights and being in the water. After unexpectedly becoming a single-income family, the family has decided to launch a fundraiser to help support Mason’s future.

“This beautiful boy is very loved and very well cared for, but we can’t keep up,” added Jackson. “We need to be able to ease some of the ways they live, by making sure they have accessible housing, equipment, and a suitable vehicle. That is the reason I am trying to raise funds and seek whatever help I can find.”

For more information on Mason’s story and fundraiser, details can be found online at https://ca.gf.me/v/c/vhqm/masons-story-living-with-a-rare-disorder

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Virginia Clinton, Local Journalism Initiative Reporter, The Intelligencer