Sometimes sick looks normal….


Samantha was very ill, before she even took her first breath…. diagnosed with Hydrocephalus at 28 weeks, long before she was even born, she’s now endured over 250 surgeries and procedures to control the Hydrocephalus and it’s complications…. the first shunt surgery when she was 2 hours old!

For those of you who don’t know about Hydrocephalus, let me explain a bit. Commonly known years ago as ‘water on the brain’, its basically a ‘back-up’ of fluid in the brain due to malformations or blockages in the ventricles in the inside of the brain. Normally, we have fluid that circulates within the brain and up and down the spinal cord, called spinal fluid. Due to congenital malformations, etc, that fluid can’t circulate as it normally does and it backs up inside the brain, causing fatal swelling of the brain and thus the head. It must be ‘shunted’ elsewhere to drain. The first surgery Samantha had was to insert the first shunt she ever had to move the fluid from her brain to her abdomen through a very tiny tube, where it’s then re-absorbed. This shunt has had to be revised, repaired, changed, lengthed, unclogged and relocated hundreds of times, each requiring a surgical procedure. The abnormal pressure inside the brain then causes brain damage, slowed emotional and mental development, sometimes seizures and profound mental handicaps. These kids are always vulnerable to infections, blockages and even death from the seizures and swelling.

She may appear to look like a normal 17 year old, but the diagnosis has left its mark on her physically, mentally and emotionally. She’s physically much smaller than the average 17 year old female, appearing more like a 10-12 year old. Mentally and emotionally functioning at about a 3-4 grade level, she doesn’t let that affect her attitude and countenance. She just glows with happiness, despite having endured such physical challenges. She has frequent seizures and most recently, had to have open heart surgery, due to blood clots filling her heart. Another complication of the shunt.
Having been hospitalized most of her life, Samantha has been homeschooled for most of that time. She will never be able to participate with any physical sporting activities like other kids her age.

This family has endured more than Samantha’s illness, having their home devastated by a fire, losing everything. Her mom shares, “Never give up hope. I let her do what she can… she knows her limitations.”

Due to some very generous donations, Samantha was able to go shopping for a couple new outfits for her photo session. She was thrilled and shopped almost till she dropped!