DOUBLE DONATIONS HAS NOW ENDED
Four family members affected by neurofibromatosis across three generations. But the most devastating diagnosis came from the smallest person.
Every 3 days a child is born with neurofibromatosis (NF) in Australia and awareness remains far too low. NF can affect anyone regardless of age, ethnicity, gender, or family history.
Natasha's story with NF started before she was born. It was a world her father was born into. She and her brother were the next in their lineage to be born with NF. At 10 years old she would sit in the bath tub and try to scrub away her spots.
She has childhood memories of regular specialist appointments, a history now replaying itself in her daughters lives.
"My husband Scott and I had our three babies in 4 years. Our first daughter Matilda was born with multiple café-au-lait birthmarks, a tell tale sign of NF.
I was instantly faced with the harsh reality that my brand new baby would soon too be diagnosed with NF. Next came Georgia, no spots, no signs of the condition, she does not have NF".
A false sense of security washed over their family with Matilda thriving as a toddler and meeting all of her milestones and enjoying being big sister to Georgia.
Danika was born next with no visible signs of NF at birth, but at five weeks her first cafe-au-lait spot appeared.
It was the beginning of yet another NF journey for our family.
NF affects everyone differently and there is no way to predict how mildly or severely someone will be affected, even within the same family.
"I always knew there was a possibility my children could be born with NF. This worry became a reality in the form of two exceptionally brave, beautiful daughters, Matilda (10) and Danika (6).
Our middle daughter Georgia (9) does not have NF, but she certainly lives with NF.
We have received an immeasurable amount of support from the Children's Tumour Foundation (CTF), especially in regards to Matilda's and Danika's schooling.
The CTF made sure their teachers know what they are facing and how it can impact their learning and better still, how they can work with the girls to get the most out of their environment.
They've also advocated on our part to ensure we are getting what we need from the NDIS.
When Danika's health news became our living reality, Meredith from the Support Services team was the friendly voice among the medical jargon who would check in with us every week".
There are many unknowns when it comes to NF, but with your gift families won't have to face a life with this devastating condition alone.
Diagnosis is rarely straightforward when it comes to NF. Particularly as both Matilda and Danika met all of their milestones in their first few years of life. Matilda started to struggle at school, and Danika started to complain of headaches that induced vomiting and was diagnosed with unrelated hereditary abdominal migraines. Natasha wasn't convinced.
"I requested a brain MRI. It was then they discovered Danika had a 5cm mass on her cerebellum. This news crushed the world we lived in. Danika underwent an 8 hour surgery to "debulk" the tumour and decrease the pressure that was causing her little body so much pain".
The surgeon advised them of the possible side effects before the surgery. Problems with balance, coordination, and speech. She may need to learn to walk again, assistance feeding, and that it may take up to eight weeks of therapy to regain her speech.
Thankfully, within half an hour of waking up and still in the ICU, Danika asked for “water” and “a chicken sandwich, not ham.”
Within 7 weeks the migraines reappeared. Another MRI revealed the devastating news that the tumour had grown back. They were naturally scared as their brave daughter was rushed away for a second lengthy surgery.
Danika's biopsy results revealed every parents worst fear, CANCER.
A third operation was not considered at this point, instead Danika was placed on a brand new drug (Lacrocrectinib) which has kept her tumour stable, but her condition remains incurable.
Of course their eldest daughter, kind, giving, patient Matilda has watched this all unfold.
One day shortly after Danika’s diagnosis, I was sitting on Matilda’s bed and she asked me if this will happen to me or her. Will we get a brain lump this scary? My heart shattered because I didn’t want to lie. I know NF is unpredictable, but I reassure her that there are so many people in her corner, doctors, specialists and the Children's Tumour Foundation who are keeping a very close eye on us", said Natasha.
Danika now enjoys going to "big school" and is making new friends. She has just started ballet and now has her own puppy to love and look after. Occasionally she gets headaches and becomes sensitive to loud noises and bright lights, but she is well known at school and her classmates look out for her.
Every 3 days a child is born with NF in Australia and with your support we will continue to advocate and provide free, personalised and accessible support or resources for every person impacted by NF in the family.
Last year, we advocated with government to secure $7million in dedicated research funds through the Medical Research Future Fund (MRFF), of which $4.6m has already been awarded to four NF research studies in Australia.
This is in addition to our own contribution to Australian NF research studies and clinical trials to help improve health outcomes for everyone living with NF.
