I first became suspicious something was wrong when Lennox was six months old. He was getting more and more birthmarks, and they were irregular, jagged shapes. Some were tiny, others the size of a 20 cent piece.
I wasn’t too worried at first, but then a few weeks would go by and more would pop up. I did some research and the condition Neurofibromatosis (NF) popped up. I took him to our GP who said it wasn’t that, but I wasn’t convinced, so I made an appointment to see a dermatologist and my suspicions were confirmed - multiple unusual shaped birthmarks are a classic early sign of the condition.
Two months later, a clinical diagnosis of NF1 was confirmed. He was just 8 months old.
Even with the diagnosis we knew it was a condition that would look different for everyone. Lenny had his first baseline MRI at 17 months, which showed a small neurofibroma on the nerve root of his L2 and several unidentified bright objects on his brain, commonly known as brain birthmarks.
In the scary world that is NF, this felt like good news.
A year later, Lenny went in for his scheduled MRI to monitor the current tumour in his L2. The results were not good and would turn our world upside down. They found a plexiform neurofibroma the size of a thumbnail on his L3. This one was different and much more concerning, so he now has yearly MRIs under general anaesthetic to keep an eye on it.
At the moment it doesn’t place any physical limitations on him, but there’s the very real possibility the tumours could wrap around his spinal cord, compressing the nerves affecting his leg movement. Within 5 years it increased in size and is now 6cm.
We will forever be adjusting to Lenny’s diagnosis as he continues to progress through the different stages that come with NF. We have good days, however most days there’s always a small reminder this nightmare is here to stay. The fear that lingers is exhausting!"
One thing for certain is his diagnosis has taught me to be ultra-aware and vigilant of any changes to his condition and making sure my voice and opinions with his medical plan are heard. As a family we actively engage in fundraisers aimed at raising money for NF and both Lenny and Jagger are fully up to speed with why we do this. The word Neurofibromatosis is permanently stamped in our household glossary of words and spoken of regularly.
In March of 2019, Lenny had his third MRI which showed no significant change. This was music to our ears, but we are well aware that tumours are not the only thing that he has to deal with.
Lenny also has moderate autism, ADHD and learning delays. He has seen speech therapists, occupational therapists and psychologists for behaviour management since he was three. Much of his life is now spent attending these appointments. He is now at an age (7) where he is noticing how frequent this is becoming and starting to ask questions.
He knows that he has this thing called NF and this has caused a “lump” in his back and spots on his skin, but I’m sugar coating it for a little while longer, until I feel he’s ready to understand.
I am determined to make sure Lenny knows that we will always in his corner, and that he is not fighting his NF battle alone. This is why my husband and I put so much effort into fundraising for the Children’s Tumour Foundation (CTF)."
In 2017, Kelly brought the CTF’s biggest annual fundraiser, Cupid’s Undie Run, to Newcastle. She says that by doing this, she has been able to “shine a light on NF and bring more NF families out of the darkness and create a network within our local community.”
Lennox now has a whole community standing by his side.
In October 2019, their neighbour Craigh wanted to do something to support his little mate Lenny and became one of five bearded blokes to finally find a good reason to shave off their pride and joy...their beards.
I’ve had facial hair for 25 years; my own son who is 23 can’t remember me without my beard. My 4 grandchildren have NEVER seen my chin and my wife Deb has been asking me for years to take it off, but I just couldn’t do it. I believe I have finally found something worthy enough for me to shave it off."
Craigh
Lenny & Kelly's Neighbour
As a community, they raised over $38,000 for the Children’s Tumour Foundation, with part of this funding going towards an Australia clinical trial (MEK Inhibitor) that has shown great promise in reducing the size of plexiform neurofibromas in NF1 patients.
Lenny was so excited to attend the charity event. He just loves social events and when he caught wind that it was about him and others with NF, it certainly made him feel special. I think he was more excited to be the one to make that first snip of Craigh’s beard.
Lennox is now 7 years old and is doing amazing.
He will continue to be scheduled for annual MRI’s to monitor tumour growth, on-going speech, OT, psychology assessments for his aggressive behaviour and will forever be delayed and behind his peers from a cognitive perspective.
He’s just started playing soccer and is really making a solid effort to participate and follow directions. He has a wildly boisterous personality and is always the loudest one in the room. He always strives to be the best little tradies assistant around the house, and we’d be lost without him.