Chara McLaughen wasn't sure she would ever see this day with her daughter, four year old Ema.
Chara McLaughen says "Scared, the doctors told us to prepare for the worse."
Chara found out while she was expecting that her baby would be born with a condition known as hydrocephalus, or water on the brain. It can cause babies' and young children's heads to swell and lead to other serious problems.
Chara McLaughen says "She essentially has a cyst on the back of her brain that blocks the spinal fluid from draining properly."
So at just five months old, little Ema had to travel to Nashville to have surgery. The only treatment available is to have a shunt placed in the brain.
Whether its infants, children or adults, the procedure is essentially the same regardless of the size of the patient the shunt is inserted, the device then diverts fluid from the brain into the abdominal cavity where it is safely absorbed into the blood stream.
Chara McLaughen says "With her the greatest thing is never knowing when her shunt is going to quit."
An estimated 50% of all shunts fail within two years, requiring further surgery to replace the shunts. At just four, Ema has already had six surgeries.
Chara McLaughen says "We want to get awareness out, let people know what it is."
If left untreated, hydrocephalus can lead to brain damage and even death. But, with early diagnosis and treatment, most children recover successfully.
"How blessed are we that she can walk, she can talk, she can go to school but so many children don't have that."
That's why Chara is a tireless advocate for the Greater Chattanooga Hydrocephalus Association. She plans to lace up her shoes this weekend to not only raise awareness, but funds to hopefully help find a cure.
3rd Annual Greater Chattanooga Hydrocephalus Association Walk 2013
October 26, 2013