3-Year-Old Owen Davidson From Tennessee Selected as 2018 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

Owen was born October 20th 2014 along with his twin sister Shelby. When he was born, he was having a hard time breathing. They sent him to East Tennessee Children’s Hospital. The first few days were rough. They diagnosed him with SVT. It’s a heart condition. Then as days passed they told us he had a IVH grade 3 on the left and grade 4 on the right brain bleed. Then they said this word.. (Hydrocephalus).

As parents we didn’t really understand what this was. So we did our research and we were heartbroken because we didn’t know when, why, or how this happened. We wanted answers, but they really couldn’t tell us anything. They did so many taps to keep the fluid off, we lost count. He had to have 2 blood transfusions.

He was too little to have the surgery. So at 1 month of age the VP Shunt was placed. Everything went great, he came home after a 40 day nicu stay. At 15 months he was diagnosed with cerebral palsy. We were heartbroken again. They first said spastic quadriplegic CP. Then changed it to mixed cerebral palsy.

At 18 months of age he had his first revision and, oh my goodness, this was bad. We almost lost him because we couldn’t get anyone to listen to us. All they would stay he doesn’t have the symptom of a shunt malfunction. No tests were done. So we had enough. We took him to the ER at the Vanderbilt children’s hospital.

The scan came back yes his shunt has malfunction and he needs surgery right now. During the surgery while they were removing the other shunt he had another brain bleed. So they had to do a EVD til all the blood was gone. So after 23 days in the picu his vp shunt was placed.

Owen has had other surgeries not hydro related. But Owen is one true fighter. He has a lot of family supporting him in this journey. He has his Mother Crystal, Father Rodney, brother Hunter, sisters Cheyenne and Faith and his twin sister Shelby. We all love him unconditionally. He always keeps a smile on his face. He is a true inspiration.

Toddler Matthew Campuzano From Pennsylvania Joins His Big Sister as 2017 National Ambassador for Incurable Brain Condition

Matthew was born in April 2015, our fifth baby. He was diagnosed with Hydrocephalus at 20 weeks, and he developed in uterine very similarly to Julia.

Once again, the Doctor’s prepared us for the worst, but we knew that Matthew would be a fighter like his big sister. He was born at 35 weeks, and he spent a few weeks in the NICU to receive his first shunt and get over the hurdles of prematurity.

Matthew still has the shunt that was placed when he was 3 days old. It’s been working wonderfully for him. He has been receiving physical therapy since he was 6 weeks old, but he will be discharged very soon!

At 18 months, he is walking and talking up a storm. He is the family comedian, and he makes us laugh all the time! Matthew became a big brother this past summer, and he loves our new baby so much!

6-Year-Old Julia Campuzano From Pennsylvania Joins Her Brother as 2017 National Ambassador for Incurable Brain Condition

Julia was born in October of 2010. She was our third child and the first girl! Our second son had passed away as an infant from a heart defect. At 20 weeks into my pregnancy, Julia was diagnosed with ventriculomegaly. As the pregnancy continued, the Doctor’s confirmed that she had severe Hydrocephalus.

We were told she may never walk, talk, see or function like an average child. We waited patiently for her arrival. She was born at 33 weeks, and she came out screaming. At 6 days old she received her first shunt. At 6 weeks old, she developed an infection and had her second and third surgery to remove and place a new shunt. She also developed epilepsy at this age.

Julia has now had 5 brain surgeries, and she has come through them all with flying colors. She was behind in gross motor skills for the first two years of her life, but now she is doing wonderfully. Her epilepsy has given us a lot of trouble as we’ve navigated the vast array of medications and side effects, but she is well-controlled for now.

She is now 6 years old and loving kindergarten. She is beginning to read and share her joy with the world. She is a special child who can cheer you up on your worst days.

TOWN OF VERNON — This Friday, 7-year-old Westmoreland Elementary student Elyse Clough plans to address Congress, hoping to educate lawmakers on hydrocephalus and to seek their help in fighting it.

Elyse and her family left this morning for Washington, DC despite her emergency surgery last Saturday.

“She made it through, and she’s a real fighter,” Elyse’s father, Tom Clough, said. “And now we’re definitely heading out to speak on hydrocephalus.”

Elyse, who aspires to be a pediatrician, has been named National Ambassador of Hydrocephalus Awareness for 2016 by the Pediatric Hydrocephalus Foundation. On Friday she will join her parents and 23 other members of Research, Educate, and Cure Hydrocephalus, a DeWitt-based support group, to advocate for hydrocephalus research.

Hydrocephalus is a medical condition caused when an excess of fluid causes swelling and pressure on the brain. It has no known cure, and the only treatment is a shunt implant. A shunt is a soft silicone implant placed in the brain, then directed under the skin to the abdomen where excess fluid is drained and re-absorbed into the body.

Elyse received her seventh shunt after a seizure Friday evening.

“I was saying good night to my son, and as I passed her room I saw her hand shaking. I knew she was having a seizure, and we drove to Upstate University Hosptal (in Syracuse). We stayed there until Sunday afternoon,” Elyse’s father, Tom, said.

Elyse suffered the seizure at 10:30 that evening, and she underwent surgery 8:25 a.m. Saturday morning. After doctors confirmed the shunt was not infected and that Elyse was healthy she was released and sent home.

“The doctors ran some tests to be sure she is eating and drinking, that her eyes are clear and she is walking and using the bathroom,” Tom Clough said. “Because of the number of sick people in a hospital the risk of infection is lower at our home.”

On Friday morning Tyler Side, 11, of Washington state, will join her to represent boys battling hydrocephalus. They will then make a number of public and social media appearances during September, which PHF has designated as National Hydrocephalus Awareness Month.

But first she will enjoy some time visiting Washington and Virginia Beach.

“I am ready to stand before the people in suits and talk,” Elyse said. “Then I will go to the beach with my pail and shovel and play.”

Request for help

Elyse and other members of the delegation will stand before the country’s legislative branch to help advocate for continued education and research for her condition. Their goal is to have Bill H.R. 2313 passed into law.

If passed the Public Health Services Act would require the Centers for Disease Control and Prevention to expand its tracking of the epidemiology — the patterns, causes and effects — of hydrocephalus and use the information as part of a national database to spur research on the condition.

“We hope to accomplish more than we did last year,” Elyse’s mother, Kim Clough, said. “We’ve had good success with (U.S. Senator Charles) Schumer’s office, but we need to get this passed in the House of Representatives first before the Senate will consider it. We met with a representative’s staffer and all he did was stare at his pen and ignore what we said.”

An ongoing battle

PHF, which has chapters in 30 states, provides supports to families and also advocates with the medical and legal communities to help find a cure. Since 2010 they have given $375,000 in grants and donations towards research and education on the condition.

Research is needed because the relief provided by shunts is compromised by their frequent failure rate. Children have a shunt failure rate between 25 and 40 percent. Replacing a shunt is a complicated and potentially dangerous process. Elyse most recently had a shunt replaced in February.

“There are 40,000 shunt replacements a year, one every 15 minutes,” Tom Clough said.

Endoscopic third ventriculostomy, a shunt-free procedure where an incision at the bottom of enlarged ventricles allows fluid to drain, only works in two-thirds of patients.

Despite its myriad disorders hydrocephalus has a high survival rate. Several of the estimated 125,000 people suffering from have reached middle-age and older. “Some of these people will be coming with us this week,” Tom Clough said.

The Clough family remains proactive in supporting Elyse. Older brother Nathan supports his sister in school, and saves his allowance to help fund a cure. Tom Clough has organized the second fun run to raise money for Elyse. Information on the run and REACH’s mission may be found at www.reachorg.org

Hydrocephalus has over 180 different causes. They include birth defects, traumatic brain injury, infection, and overproduction or under-absorption of brain fluid. Symptoms include headaches, nausea and vomiting and sensitivity to light and flu-like pains. Elyse developed hydrocephalus after she was born premature, at 24 weeks.

Along with the risk of seizure, Elyse takes medication for her underdeveloped lungs (caused by her premature birth) and undergoes physical therapy, occupational therapy and speech therapy. She has trouble feeding herself anything besides finger foods. And she’s endured six shunt operations.

“This child could take up all of our time, but it is what it is,” Kim Clough said. “We know there has to be a better solution. If we can get political help then we will be closer to that solution.”

Source:

I spent time with 6th year old Elyse Clough and her family to see how hydrocephalus impacts their family. Elyse has had 6 brain surgeries since birth, tonight you hear Elyse’s story.

“She was only 24 weeks along when she was born. She weighted a pound and seven ounces. Two weeks after she was born we found out that she had a massive brain bleed and so she essentially had a stroke. And as a result of that, that was how she developed hydrocephalus,” said mom Kim Clough.

Having an incurable brain condition isn’t stopping Elyse from having the time of her life. She enjoys playing games with her big brother and has big plans for the future.

“And this is lamby, yea, a doctor,” Elyse Clough said.

Sometimes though Elyse can’t have fun like every other little kid. Sometimes her shunt, that keeps her alive, shuts down and overflows with fluid…sending Elsye to the hospital for emergency surgery and leaving the family at a standstill.

“Quiet, boring, lonely,” Nathan Clough said.

“She knows that when she has a seizure that she needs to go to the hospital. She knows that when she’s in the hospital she’s going to need surgery and have an incision and she knows after surgery she won’t be able to go to school or see her friends or her cousins for a long time until she heals,” Tom Clough said.

Seeing what Elyse goes through on a daily basis, mom Kim and dad Tom along with other families and supporters created the reach organization. Research, educate and cure hydrocephalus. This gained national attention from the pediatric hydrocephalus foundation to send Elyse to Capitol Hill on August 19th for National Hydrocephalus Awareness Day.

“Are you excited for DC? Yea. What are you going to do down there? You’re the spokesperson for hydrocephalus. Oh, yeah,” said Elyse and brother Nathan.

Elyse was a little camera shy, but her family is very excited for the trip that Elyse is the spokesperson for and to one day find a cure. But, until then they hope to gain support in Washington to create a spinal fluid bank database. For more information head on Elyse and the condition head to www.hydrocephaluskids.org.