It is with so much sadness that I have to let you all know that we have lost another child to the horrible disease/condition Hydrocephalus!

Our own PHF Ohio State Chapter Director, Brandy J., lost her little girl last evening. Please keep them in your prayers.

We are pleased to announce that 2 more Members of Congress have joined the Congressional Pediatric & Adult Hydrocephalus Caucus. They are South Carolina Congressman Joe Wilson & Congressman Mick Mulvaney, also of South Carolina.

The mother of a 28-month-old Durango boy with hydrocephalus has taken on the leadership of the Colorado chapter of the national Pediatric Hydrocephalus Foundation, a support group with a presence in 25 states.

“I’m promoting awareness of hydrocephalus and raising funds for research,” Christina Brown said Friday. “There is no cure now, which is unacceptable.”

Hydrocephalus is a condition in which cerebrospinal fluid accumulates in the brain. This can cause pressure in the skull, resulting in enlargement of the head, convulsion, tunnel vision, mental disability and possibly death.

The first fundraiser for Brown’s group is set for Sept. 23, when participants will bowl at Rolling Thunder Lanes at the Sky Ute Casino in Ignacio.

Brown began gathering information on hydrocephalus when a pediatrician recommended during a well-baby check at 4 months that her son, Jaden, be tested for a neurological disease. Examinations revealed that he had hydrocephalus and hemiplegia (stroke-induced spasticity) on his right side.

She rattles off facts such as:

One in 500 newborns receives a diagnosis of hydrocephalus.

The disease can be congenital or acquired.

Hydrocephalus is the No. 1 reason for pediatric brain surgery.

Americans spend $1 billion a year on treatment for hydrocephalus.

Research into diabetes is funded at $6 per person, hydrocephalus at 30 cents per person.

Brown was in Washington for two days two weeks ago with other families who have children with hydrocephalus to educate legislators and others about the disease and promote research.

“There were 20 families from 14 states,” Brown said. “We’ll contact them again next year for funding for research.”

Josh Green, a spokesman for U.S. Rep. Scott Tipton, R-Cortez, said the group left a packet of information for the congressman. Tipton wasn’t in the capital at the time.

Brown knows four families and one adult in Durango who have hydrocephalus in the family. She said there are about 30 similar families in the Four Corners.

“Jaden is fine,” Brown said. “He just had surgery as a result of being tongue-tied and is doing well.”

The recently formed hydrocephalus chapter held its first meeting in July. The next meeting is from 5 to 7 p.m. Oct. 12 in Durango Public Library.

Amanda Pierce, of Huger, and her two children, including 2-year-old Ava, who has hydrocephalus, drove to Washington, D.C., and joined 20 families from 14 states in meeting with their elected representatives.

Hydrocephalus is a condition where excessive fluid gathers in the brain, abnormally widening spaces and placing potentially harmful pressure on brain tissues. Due to lack of advancements in treatment, many affected individuals are left unable to lead full and productive lives.