4-Year-Old Hailie Mussinan From New Jersey Selected as 2014
National “Face” of Hydrocephalus Awareness for Incurable Brain

Last year our then 3 year old Hailie started having headaches daily sometimes followed by vomiting. We also noticed her balance was off and her eye would slightly turn in at times. We took Hailie to a pediatrician, an eye doctor, and a neurologist who all assured us that it was most likely sinus related. Although her Mother kept insisting something was seriously wrong!

October 2nd of last year Hailie was scheduled for an outpatient MRI. We were quickly admitted shortly after that and she was diagnosed with Hydrocephalus and a cancerous low grade brain tumor; Pilocytic astrocytoma.

Hailie needed an emergency surgery to put in an external drain to relieve the pressure from the Hydrocephalus. Two days following she had a craniotomy and we are blessed to say the tumor was fully resected! Days following the craniotomy a shunt was placed but not for long.The night before we were to get released she had a seizure and a very high fever.

The shunt was removed and another external drain was put in place. Hailie spent the next few days sleeping naked on ice filled cloths to bring the fever down. She was on a very strong antibiotic for 14 days which was hard on her veins during which IV changes were frequent to treat the shunt infection. Finally she was ready for a new shunt and we were able to go home on Halloween.

She had a total of 5 brain surgeries in 22 days! In the summer of 2013, Hailie had another surgery because her shunt incision was not healing correctly. She has also been diagnosed with some eye issues from the Hydrocephalus and tumor. We are in the process of trying correctional therapy.

Today Hailie is a happy 4 year old who loves to dance and is looking forward to starting school next year!

4-Year-Old Owen Rush From South Carolina Selected as 2014
National “Face” of Hydrocephalus Awareness for Incurable Brain

Owen was diagnosed with hydrocephalus in utero at 20 weeks. We were well prepared for his arrival the week before Christmas, though nervous but exited as well. Our miracle was born at 37 weeks on December 17, 2009 with an OR full of staff and no complications. He stayed in NICU for 5 days with a small amount of feeding issues. He was discharged a few days before Christmas and we spent the rest of holidays with our family.

He had his initial VP shunt placed on January 5th and we came home 4 days later. He had his first emergency shunt malfunction on Mother’s Day 2010, his second shunt malfunction was a few weeks later on Father’s Day. Few weeks later he was back in for another shunt revision. This time they changed the shunt location and type, it was placed on the top right side of his head and programmable. All things were well until Thanksgiving 2010 he had a skull repair on his old shunt site, they used a plate and screws to fix the bone that wouldn’t seal up.

All these surgeries before our miracle turned 1 years old. He had his first seizure at 10 months old. since then hes tried 10 different medications an still having seizures on a daily basis. We traveled to Le Bonheur’s Children’s hospital in Memphis Tennessee in October 2012 and the team confirm he wasn’t a good candidate for any type of Epilepsy surgery, and were told how severe his developmental delay was after being through an intense evaluation, which we already knew and was shortly diagnosed with Autism.

We then traveled to Duke Hospital in NC for a Vagal Nerve Stimulator in August 2013 in hopes to improve his epilepsy and overall quality of life. He can’t feed himself, dress himself, he’s not toilet trained, nor can he tell you If he’s in pain or say I love you yet! He has been in Occupational, Physical and Speech Therapy since he was 4 months old.

He started school when he turned 3 to a school for the most disabled children in our county. Owen has adapted very well with the routine and friends, and is most importantly loved unconditional by all the staff at his school. Despite Owen’s disabilities he never stops smiling or wanting hugs.

Hydrocephalus Awareness Month: Audubon Youth Advocating For Her Condition

GRAVES COUNTY, Ky – A local boy is fighting a lifelong, rare, incurable disease. Hydrocephalus or more commonly known as “water on the brain” is when fluid builds up inside the skull and leads to brain swelling.

Ten-year-old Payton Kraft often finds himself playing alone.

“Other kids don’t understand what I go through. None of them do,” said Payton.

“Payton was probably 3 to 4 months old and we noticed he wasn’t progressing like normal children do. He was delayed,” said Payton’s mother, Sarah Wilson-Kraft.

That delay, had Payton’s mom, Sarah panicked something was wrong.

“His head was extremely large for his age…They measured his head many of times and they sent us for a cat-scan and that’s when he was diagnosed,” said Wilson-Kraft.

Payton was diagnosed with Hydrocephalus, which is an incurable, brain disease.

“There was a lot of fear, unknowing what was going to happen and concern for him,” said Wilson-Kraft.

September is National Hydrocephalus Awareness month. Payton’s mom is raising funds with arts and crafts with the hope of one day finding a cure.

“The only thing we can do is pray everyday there’s no infection,” said Wilson-Kraft.

In the meantime, a shunt was placed in Payton’s brain.

“It’s in the center of his head, that goes down his neck into his stomach and drains the fluid out,” said Wilson-Kraft.

Payton considers himself a fighter, but he says every now and then his shunt hurts him. He vows to never give up and to continue educating others about his condition.

“I hope one day that there will be an end to this,” said Payton.

In her spare time, Payton’s mom, Sarah Wilson-Kraft, spends her time crafting to help fundraise for a cure to Hydrocephalus. She makes scarves, wreaths, bracelets, ribbons and bows, rugs and tu-tu’s. To check out those items and help fundraiser for Hydrocephalus, click here.

To donate to Payton and help fund a cure for Hydrocephalus, click here.