Two Hearts Are Better Than One
Hudson's story - by Helena (mum)
Hudson was diagnosed with NF at 5 years of age. As is the case with many, we have no family history of NF.
We noticed a developmental delay from 2-3 years of age with limited speech and a delay with walking. After seeking support from a Speech Therapist, Hudson was diagnosed with Developmental Speech Delay. We were advised that Occupational Therapy would also be of benefit to Hudson, given his movement delays.
It wasn’t until a visit to the paediatrician to have him assessed for ASD, (which he was also diagnosed with), that she noticed the “birth marks” all over his body. After talking it through with the paediatrician, it was concluded that Hudson most likely had NF1. This came as a huge shock to us as it was something we had never heard of, nor had the birth marks ever been pointed out to us that they could signify something other than just birth marks.
All I remember from that appointment, was the paediatrician constantly saying “I’m sorry”.
I thought to myself, if she is apologising to me, it must be bad. Of course, as soon as I got home I started Googling. I was actually relieved to learn that it all made sense now – his tiny stature, his developmental delays and his birth marks.
It was a lot to process at the start; however, there is so much helpful information and resources available, such as the Children’s Tumour Foundation. It really helps you see you are not alone in this journey. In fact, since learning of Hudson’s diagnosis, we were surprised to learn that we actually know another little boy with NF!
We are fortunate to have the most wonderful Occupational Therapist in our area, who has now been working with Hudson for 4 years. She and her team have been a god send and Hudson absolutely loves going to Occupational Therapy and Exercise Physiology. It is honestly his favourite part of the week. They are such a great support to Hudson and are always a comforting sounding board for our concerns as well.
Hudson is a normal, happy little boy who loves camping and technology. He has just celebrated his 9th birthday on the 7th May – which coincides with NF awareness month! He is proud to wear his blue and green NF ribbon every day and loves it when people ask him about it. He will proudly say, “It’s for NF, which I have”.
It is difficult for Hudson to understand NF at this stage, however he knows he has “spots” which are special and unique and are part of his story.
He actually has a café-au-lait on the centre of his back in the shape of a heart and he is very proud to show off his “love heart”.
Two hearts are better than one!
Hudson is surrounded by a beautiful group of friends who see him as no different to any of themselves, except that he’s half their size. He currently has over 25 café-au-lait spots, plus freckling.
Hudson is very small for his age and his maturity is that of about a 6 year old. He does fatigue quickly which can be very frustrating for him; however, he also has the determination to push through and finish what he started.
Hudson has just undergone his first MRI which he handled very well considering he has trouble staying still for long periods of time. We are fortunate that specialists visit locally a couple of times per year and our longest travel for specialist appointments is only a 4 hour drive.
All in all, I consider Hudson to be one of the lucky ones as far as NF goes. He is happy, he is relatively healthy and his laugh is simply contagious.
As part of NF Awareness Month 2024, Hudson’s big brother, Cooper, fundraised for the CTF. Cooper has put a spin on the ‘Steps Towards a Cure’ campaign and instead, Cooper is ‘Racing Towards A Cure’. Cooper does competitive Go Karting and has asked for sponsorship in the form of a dollar value for every km he races in the month of May or alternatively, make a donation on his fundraising page.
Cooper, 11, is a great big brother who saw an opportunity to help raise awareness of NF through something he enjoys doing.
Cooper also has his own dog toy business, Mighty Mutt Dog Toys, which he has dedicated $5 from the sale of every dog toy in the month of May, towards his donations. Cooper developed this business as a way of stopping used Go Kart tyres go into landfill, and instead, using them as dog toys.
I am very proud of the way Hudson has embraced life with NF and although he is only at the start of his journey, he has a wonderful support system around him and we are all learning about NF together as we go about a normal life.