Jesse was diagnosed with Nf1 prior to birth after I had an amniotic reduction at 35 weeks.
No one in our family had heard of Nf before and Both Scott (Jesse’s dad) and I struggled to understand and wrap our heads around what NF was and what our precious unborn baby was about to face.
Jesse was born on the 6/3/2018 and in his short 7 months earth side he has had 6 hearing tests, heart ultrasounds, abdominal ultrasounds, seen cardiologists’s, paediatrician’s, had his first MRI under a general anaesthetic and will have his first ophthalmologist appointment this month.
So far Jesse has 12 cafe au lait marks on his body and has been a resilient and strong little man. He has a few minor heart issues that need to be monitored but otherwise presents as a happy 7 month old baby. We just cant predict how NF will affect him…
Nf is so unpredictable and affects each child differently. It’s like a ticking time bomb. Tumours can form within my beautiful boy at any time. No child should have to live out their childhood the way NF children do, by being in hospital for long periods of time, or having major operations to remove tumours that are in compromising areas of their body.
I’ll do everything in my power to be Jesse’s voice, and do whatever I can to conquer Nf, which is why I am proud to be helping manage our GC Cupid’s event. It’s our largest community fundraising event for NF, it helps improve awareness and raise much needed funds to find a cure for our kids!