Neurofibromatosis Awareness Walk

Children’s Tumour Foundation is the support organisation for people living with a genetic condition called neurofibromatosis (NF).  NF affects one in every 3,000 people, which is more common than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined.  NF causes tumours to grow on nerves throughout the body.  It can be life-limiting and can lead to blindness, bone abnormalities, learning disabilities and chronic disabling pain.

Put simply, it means your tumour suppressor does not properly function and every nerve cell in your body has the potential to become a tumour.  As a result, it presents multiple health issues across a lifetime.

Three years ago we established a support group in Townsville for families affected by or afflicted with the condition known as neurofibromatosis. 

The reason I am so passionate about this cause is because my husband and both my children have NF.  My husband’s case is extremely mild with only a few skin tumours and some café au lait spots on his body.  My eldest son’s case is complicated by the fact that he was born 15 weeks prematurely and has cerebral palsy, autism and sensory processing disorder.  Ethan is 5 years old and has just started at school this year.  He does have learning difficulties but it is difficult to know whether they are caused because of his NF or his prematurity and resulting afflictions.


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My youngest son, Nate is 3 years old and he has a large plexiform neurofibroma (tumour) attached to his right eye.  He also has sphenoid dysplasia, which means the bone behind his eye is missing or deformed and together these issues have caused him to have some major facial disfigurements.  At 5 months of age, Nate started on a chemotherapy drug to try to stabilise the growth of the tumour but by 8 months the tumour had grown so much he had to undergo surgery to debulk the tumour.  These tumours generally cannot be removed because they are attached to nerves and in Nate’s case, his is also attached to a vein that intertwines through the brain.  The tumours are generally benign (which Nate’s currently is) but it already causes him significant pain and will potentially cause him to lose his vision.  He has a very happy disposition which helps when people stare and point. 

To raise awareness and funds for The Children’s Foundation we will be holding a walk at The Strand on May 16th.  We will meet at Strand Park at 9am and walk to the rockpool and back from 10am.  We will be having giveaways for the children along with guess the number of snake lolly’s in a jar and a sausage sizzle courtesy of Lions Club.  We are also holding a raffle with prizes including a 5 night stay at Magnetic Effect (a self contained holiday home) on Magnetic Island and Sealink Qld ferry tickets, a night a Jupiters Townsville, breakfast for 2 at Aqua, dinner for 2 at Longboards bar and grill and Event Cinema movie tickets, Cowboys game tickets and promo pack and a 6 month family pass to Reef HQ.  Tickets are only $2 each or 3 for $5.

Please like our facebook page “Neurofibromatosis (NF) Townsville QLD” and find facts about NF.  Donations to The Children’s Foundation can be made here.

Thank you so much for your support,
Christine.


This article was submitted to Townsville Women by Christine.
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