I want yourself to imagine that you are a new parent, your precious little baby is just 6 months old. Your baby hasn't been hitting its milestones on time and your Dr wants to run a few tests. You are sitting in a room at the Dr's office, cuddling, cooing and playing with your precious baby waiting for the Dr to come in to tell you that the tests came back fine, that some children just take longer than others to reach their milestones.
The door slowly opens and the Dr comes in. He won't look at you or your child. He is nervously shifting his weight from foot to foot, playing with pen in his hand. It seems that he is doing everything he can to avoid looking at you. He finally sits down with a deep sigh. Lifting his head he looks at you and to your horror there are tears in his eyes.
"I've never had to do this before." he says softly and your heart begins to race, your palms sweat. Oh my God, you think. What could be so bad?
"The tests have revealed that your child has Canavan disease."
"What's that?" you ask fear making your voice small and weak.
"Canavan Disease is a rare fatal genetic neurological disorder that deteriorates the white matter (myelin) in the brain. White matter is responsible for forming a protective coating around every nerve in the brain and spinal cord to ensure that nerve impulses are properly transmitted from one part of the body to another. Without myelin, the body cannot perform normal motor skills, can become increasingly stiff or floppy and suffers a multitude of symptoms including issues with swallowing, severe scoliosis and hip dislocations. I don't know how to tell you this, but the skills that your child has acquired they will lose. Eventually your child will become trapped in their bodies, develop seizures, lose their ability to see and swallow, and die in the first decade of life. I am so sorry."
"Treatment?" you eek out.
"There is none."..................................
If you are just imagining this scenario then you are one of the lucky ones. This is sadly the reality for parents of child with Canavan. Their beautiful, wiggly, giggly, cuddly baby will never be able to say I love you.....never be able to hug them.......never be able to kiss them....never mind no dating, graduation, driving, or any other kind of milestone that goes along the transition to adulthood. The hopes and dreams they had for their children are dashed, changed instead to justs hopes and dreams of their children living.
Can you imgaine worrying constantly that the next cold your child gets might kill them. Can you imagine constantly being haunted by the thoughts of your child's death.....it's not something you can get away from. Every waking moment, every dream when you sleep is how can I save my child? Can you imagine living with that?
This is the reality that many of my friends live with.......their children are dying........my daughter may be dying.
This is Amber Rose. Her short life was cut short by Canavan. She passed away just a few months short of her 8th birth day.
This is Ariel. She is Amber's sister. She also has Canavan.
This is Lana. She also has Canavan. You can support Lana by joining Saving Lana on Facebook.
This is Lilliana. She also has Canavan. You can support her by joining Lilliana's Hope on Facebook.
And this is my daughter Lily and my son CJ. Lily has Canavan. If you are viewing this blog then you are already supporting her. Please join her blog!
Thank you for reading!
