"Yes, I would change my son if I could."

People always say that they would never change anything about their children… that they are perfect as they are, but given the chance, I would change Dexter. 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. We were told Dexter had Neurofibromatosis (NF1) when he was just one year old, but nothing could have prepared us for those results.

For me the only thing harder than hearing that your perfect baby boy has tumours riddled throughout his tiny body, is hearing, repeatedly, that there is nothing any of his 14 specialists can do to help him. While his tumours are currently benign, they are growing and none of his specialists can tell us what the future holds for Dexter. 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.

"None of his specialists can tell us what the future holds for Dexter." (Image: Supplied)

How do you get up in the morning, put on a smile and greet your family with positivity, when these are the only certainties you have for your youngest child? I never considered that I would have to deal with something as devastating as a sick child. The decision to leave my job was difficult for me, financially it was a big ask of my family to try to survive on a single income, but more than all of that, emotionally, perhaps even selfishly, I was giving up the only part of myself that was just for me. I am struggling. This is a hard thing to admit, but it is the truth. I


struggle with depression, anxiety, and severe stress related to dealing with Dexter’s Neurofibromatosis. My full time job right now is fighting for my family. I spend my evenings researching neurofibromatosis, typing up notes from the many specialist appointments that Dexter has through the week, and trying to relax enough to get to sleep at night. I don’t want to do these things. I need to. I need to be doing something…anything…to help my baby boy. This isn’t about me, it’s all about Dexter.

Dexter and his big brother Harrison. (Image: Supplied)

My days are spent trying to create a calm, happy and loving environment for my family. 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. 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. We are desperately trying to find hope for Dexter, for our future. There is a clinical trial that we are clinging to the possibility of for our sweet boy, but so much uncertainty surrounds it and we don’t yet know if we even qualify to participate.

"We are desperately trying to find hope for Dexter, for our future." (Image: Supplied)

May is Neurofibromatosis Awareness Month. There are more Australian's suffering from Neurofibromatosis than Cystic Fibrosis, Muscular Dystrophy and Huntington's Disease combined. Our greatest desire is for this surprisingly common condition, occurring in 1 out of about every 3000 births, to become more understood and known throughout the community.

We need everyone’s help to raise awareness. To give us any hope of finding some treatment or even a cure. Not just for our beautiful boy, but for all of those suffering from this condition.

So yes, I would change Dexter. I would take away his NF.

Rebecca Lilly is a married, 33-year-old mother of two young boys. She lives in Algester, Brisbane.

To donate to the Go Fund Me account set up to help Dexter’s mounting medical costs, visit:

To read Rebecca and Luke Lilly’s blog, Dexter’s Tales, visit:

For more information about Neurofibromatosis, visit the Children’s Tumour Foundation of Australia website:

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