Mum Shares Painful Experience of Her Son's Neurofibromatosis

Mum Shares Painful Experience of Her Son's Neurofibromatosis

“I fear for Dexter every moment of every day. This condition has no cure, no treatment options, no real possibility for hope.”

Parents are expected to accept their children for who they are, no matter their imperfections. But for this mother, she’d change her child in a heartbeat.

“My family is my purpose in life, but in October 2015 our world changed irrevocably, and forever, with our baby boy’s first MRI results,” said Rebecca Lilly in her Mama Mia story.

“We were told Dexter had Neurofibromatosis (NF1) when he was just one-year-old, but nothing could have prepared us for those results.”

“Yes, I would change my son if I could”

Photo credit: Mama Mia

The hardest thing for Rebecca is not even the many tumours that had invaded his son’s boy, but hearing again and again from specialists that that there is nothing they could do for her son.

All 14 specialists.

“While his tumours are currently benign, they are growing and none of his specialists can tell us what the future holds for Dexter,” she said.

“We know that we won’t have him with us as long as we want, we know that this condition is degenerative, but that is all we know for certain.”

She admitted that she found it difficult to get up in the morning and face the day smiling with her son’s illness hovering above their heads like a dark cloud.

“Yes, I would change my son if I could”

Because of this devastating blow to her family, she admitted that she has been struggling with anxiety and depression, with her days spent researching everything she could about Neurofibromatosis.

“I fear for Dexter every moment of every day, but I also fear the impact this condition is having on my eldest son, Harrison, 5 years,” Rebecca said.

“He is such a beautiful, sweet and sensitive soul, and I know he worries for his baby brother. This condition has no cure, no treatment options, no real possibility for hope.”

What is Neurofibromatosis?

According to Mayo Clinic, it is a genetic disorder, usually diagnosed in childhood or early adulthood, that causes tumours to form on nerve tissue. These tumours develop anywhere in the nervous system, including the brain, spinal cord and nerves.

“The tumours are usually noncancerous (benign), but sometimes can become cancerous (malignant). Symptoms are often mild.”

But complications are likely to arise, and they include hearing loss, learning impairment, heart and blood vessel (cardiovascular) problems, loss of vision, and severe pain.

If you have any insights, questions or comments regarding the topic, please share them with us!

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Written by

James Martinez

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