Vanishing White Matter Disease

Chloe

 

Two years ago, our beautiful little girl, Chloe was running around enjoying her childhood like any other 3 and a half year old, without a care in the world, oblivious to the devastating disease that was lying dormant inside her.  Chloe has a bubbly, loving personality and loves to be cheeky too.  She adores her big sister Madeleine, aspiring to do all the fun activities that Mads enjoys. like dancing, netball, swimming and surf club.

Sadly, now this will not be possible for our precious little girl.

After falling ill from a vomiting virus at 3 and a half, Chloe found it difficult to balance, walk or stand up without support and her little hands started to shake.  After many agonising months of testing, Chloe was diagnosed with an extremely rare, genetic, terminal brain disease that affects mostly children – Vanishing White Matter Disease (VWM).  There is no treatment or cure currently available.  VWM is so rare there are only 4 known cases in Australia and 260 worldwide.

Symptoms generally appear between the ages of 2 and 6 years old.  VWM disease is devastating.  Depending on the severity of the disease, it causes the inability to walk, talk or eat as well as loss of motor skills, spasticity, mental retardation, blindness, deafness, seizures and coma and is followed by death often before reaching teenage years.  Heartbreakingly, within 2 years, Chloe has gone from running around like a normal little girl to now being confined to a wheelchair.

Triggers that can accelerate Chloe’s condition are; infection with fever (mild temperature), minor head trauma (just a small bump to her head), emotional or physical stress, extreme fright and spending long periods of time in the sun in warm weather.  All of which are quite hard to avoid with a young child at the best of times.  Chloe now wears a special cap to protect her head from bumps and we do our best to avoid the other triggers as much as possible, while still trying to maintain a normal daily family life.

Because VWM disease is so rare, there is no government or pharmaceutical funding to find a cure.  It is left up to the affected families to raise these funds to save our children.  But there is hope!  Scientists are working on a cure and getting close, however with increased funding, this cure can come in Chloe’s lifetime.  It is our hope that you will share this story and help save Chloe and all the other children affected by this horrible disease.

1 Comment
  1. Hello, from Townsville. My heart is with you in this time. My nephew and best friend had AdrenoleukoDystrophy. A bit similar. Only young boys get it. I gave up my world and my family moved in to help him with his needs. We too fundraise, for ALD.
    All my love, Angie xo