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NEWBURGH — Rebecca Lopez of Newburgh has for years quietly assisted the Pediatric Hydrocephalus Foundation’s New York State Chapter to help raise awareness and money to fund research projects on this rarely talked about, incurable brain condition. Lopez’s son, 10-year-old Isaiah, is fighting the disease, in which excessive fluid gathers in the brain, abnormally widening spaces and placing potentially harmful pressure on brain tissues. It occurs in approximately one of every 500 births and in over one million Americans today. Because of the lack of advancements in treatment, many affected individuals are left unable to lead full and productive lives. Untreated, hydrocephalus can be fatal.

Wanting to do even more, Lopez decided to take a more active and public role, and asked about joining the New York Chapter as an additional state director and take on additional responsivities in the all-volunteer Pediatric Hydrocephalus Foundation.

“I am involved with the PHF to not only help raise awareness and fund a cure, but to let my son Isaiah know that I will support him anyway imaginable. My dream is to find better treatment options and one day, a cure,” Lopez said.

The Pediatric Hydrocephalus Foundation, an all-volunteer non-profit 501(c) (3) charitable organization, educates the community by creating awareness about Hydrocephalus. PHF, with 35 state chapters, provides support to families, friends and children affected by this incurable brain condition. PHF assists the medical community by raising funds to search for treatment options, and ultimately, a cure. PHF advocates on behalf of members while working with policy makers at the State and Federal levels to push for more research and support in the fight against Hydrocephalus. Since 2010, PHF has awarded over $350,000 in grants and donations to hospitals, neuroscience institutes and medical research centers for research and education. For more information, visit hydrocephalusKids.org.

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12-Year-Old Madelyn Edgecomb From California Selected as 2015
National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

Madelyn was diagnosed with congenital hydrocephalus due to aqueductal stenosis in utero at 21 weeks. She was born at 35 weeks and had first shunt placed at 1 day old. She has had 29 revisions,1 successful ETV and 4 chiari malformation surgeries. She currently is shunted along with the ETV.

Her neurosurgeon is Dr. Peter Sun of UCSF Benioff Children’s Hospital Oakland, (formally Children’s Hospital Oakland), who is amazing! Her shuntaversary is tomorrow and it will mark 1 year since her last revision! Madelyn loves to listen to music,reading, school,and making crafts. Madelyn loves her family and friends.

We are ecstatic to have Madelyn to be chosen as the female representative.Thank you to everyone for all the support over the years. I want to thank all the families of children who have hydrocephalus, for their continuous support.

4-Year-Old Wyatt Whitworth From Ohio Selected as 2015
National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

Wyatt was born three months premature on Dec. 21st 2010, and weighed only 2 lbs 8 oz. I , his mother, contracted E Coli which caused me to go into preterm labor. Because I lived in a remote area, I was jetted to Boise’s hospital that had a NICU.

Wyatt was born the next day. Due to his severe prematurity, he suffered a right grade 4 intracerebral hemorrhage, and a left grade 3 hemorrhage. He was also septic , on multiple IV antibiotics, and on a ventilator.

I didn’t find out until the next day that Wyatt had the brain bleeds and was told he would probably not make it, but if he did, he would have moderately significant cerebral palsy, severe brain damage and that a normal outcome was not possible for him. The prognostic factors included clot size,early development of hydrocephalus and the severity if the prematurity.

Wyatt had a CSF reservoir implanted for serial taps to help manage his progressing hydrocephalus at two weeks of age.
A month later, a dye test was done to determine if there was a blockage in the subarachnoid space and what could be done to manage his hydrocephalus once discharged. The test showed that Wyatt had obstructive hydrocephalus.

Wyatt’s neurosurgeon , Dr. Bruce Cherney, felt the primary option was a ventriculoperitoneal shunt, though an alternative option would be Endoscopic Third Ventriculostomy “ETV”.

The ETV’s results were poor in his age group, with only a 15% success rate. But if it was successful, the failure rate was very low compared to a shunts.

I decided to try the ETV and it was a success for Wyatt! Praise The Lord!

As of today, Wyatt has not had any complications associated with the ETV and has not had one seizure ever (even though he was at high risk for them)! He has yearly MRI’s done to check his hydrocephalus, has mild cerebral palsy, wears AFO’s (braces) and started walking in October 2013, has had multiple eye surgeries, he goes to a special needs preschool (which he loves), receives private pediatric Physical and occupational therapy weekly,enjoys playing basketball, going to church, dancing, being around people and spending time with his family.

After everything Wyatt has gone through and overcome in his short life, I believe he will be the perfect representative to bring awareness to the PHF.

Hailie Mussinan, of Woodbridge, is just 5, and she already has had a staggering seven surgeries.

An MRI on Oct. 2, 2012, revealed Hailie had a brain tumor that required immediate surgery. At St. Peter’s University Hospital, Hailie’s parents met with Dr. Arno Fried of Advanced Neurosurgery Associates (ANA).

“(Dr. Fried and his team’s) demeanor and knowledge were extraordinary. Immediately it was like a weight lifting off of us,” said Melody Mussinan, Hailie’s mother. “They couldn’t initially tell us anything — what kind of tumor, whether she was going to live. As parents, we were petrified waiting to find out what was happening to our child.”

Hailie was diagnosed with a juvenile pilocytic astrocytoma (JPA), a rare childhood brain tumor, the accumulation of cerebrospinal fluid (CSF) in the brain that can cause enlargement of the head and, in some instances, brain damage.

“When Dr. Fried did the craniotomy, he told me that the skin of her skull was so thin from the pressure of such a large tumor that he actually started seeing the tumor before he cut into it,” Melody Mussinan said, adding that the tumor was described as the size of a golf ball, surrounded by a softball-sized cyst.

“You can imagine that the pain inside her head. Hailie was always the quiet kid who sat on the steps with Mom and Dad and watched her sisters play in the yard. We always just thought that was her personality.”

Before her initial MRI, Hailie was said to be frequently vomiting and coming down with headaches.

“I never left Hailie’s side,” her mother said. “I never stepped foot out of her hospital room. My family and friends were helping around the clock to care for Hailie’s three sisters so that my husband could work our small family business and come to the hospital. The doctors at ANA and nurses in the pediatric ICU literally become my family. They were who I cried to.”

Hailie needed an external draining device (EDD) and a craniotomy, followed by a shunt, which entails the “placement of a tube (the shunt) in one of the brain’s ventricles or into the space of fluid in the spine in order for the spinal fluid to be safely absorbed.” Just days before being discharged, Hailie went into a seizure simultaneously as her shunt failed. Hailie was given a high dose of antibiotics as well as EDD and shunt replacements.

Hailie was discharged on Oct. 31, 2012. In 22 days, she had accumulated five surgeries.

“For such a little girl, my husband and I are enamored by her strength,” her mother said.

In the summer of 2013, Hailie underwent a shunt incision revision under pediatric plastic surgeon Dr. Frank Ciminello. This past October, Hailie underwent a “double eye procedure for problems caused by her hydrocephalus.”

“Besides (her visits every six months to) Dr. Fried, Hailie … gets an MRI with IV sedation every six months to make sure there is no tumor regrowth and to check that the shunt is functioning properly,” her mother said.

Pediatric Hydrocephalus Foundation (PHF) selected Halie to be one of two children to serve as 2014 Face of Hydrocephalus Awareness to help spread awareness across the United States for the condition.

“There’s no way to say thank you. Every time I see Dr. Fried and say that, he answers with a smile and ‘this is my job,’ ” Melody said. “But he and the other doctors I’ve seen at ANA are amazing. They don’t have to do their job with such compassion. They care. Hailie is more outgoing. She runs and laughs alongside her sisters while we watch. To see that is a feeling you just can’t describe.”

Andrew Sutton is an editorial intern with the Courier News, Home News Tribune and MyCentralJersey.com

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