Hydrocephalus Canada

Paula and Jordan Sarraf Enjoying Life and Celebrating Achievements

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Jordan Sarraf is your typical 15-year-old boy.

He loves his Nintendo DS, eats like a champ and knows how to push his mothers buttons. You may even say he’s more active than the average teenage boy. He’s a competitive 10-pin bowler, swims weekly, enjoys cooking and is a visual artist whose work has been featured in a charitable calendar. He was even excited to get back to school after summer break. What does not make Jordan a typical teenager is the fact that he is a teenager at all.

At birth Jordan was given a four-month life expectancy.

Jordan was born with congenital hydrocephalus, an excess of cerebrospinal fluid in the brain, which can lead to multiple issues including impaired vision, impaired hearing, mobility issues, seizures, headaches and learning disabilities.

During a late ultrasound at 34 weeks, Jordan’s mother, Paula, was given the news. “Those early days were pretty difficult. Receiving the news that your baby has something like this is pretty horrific for any family, but I had a healthy pregnancy up until that point and there was lots of movement within me, so I knew his brain was sending good messages to his limbs,” she says. “So I put my faith in God and just kept praying along with the support of family and friends.”

Fortunately, Paula’s pregnancy was just nine days shy of being full term. Seventy-two hours after birth the fluid in Jordan’s brain began to drain on its own, which meant he would not have to undergo surgery to place a shunt in his brain – a surgery that 85 per cent of children born with hydrocephalus must face. “We were elated, because having a shunt means life-long issues, with it getting plugged or infected, and Jordan was spared of that, so that was a huge relief,” says Paula.

Jordan also suffers from two other neurological conditions, an agenesis of the corpus callosum (an underdevelopment of the membrane that connects the two hemispheres of the brain) and a mild case of cerebral palsy. These conditions make Jordan more repetitive, literal and hampered his language development early on. But these challenges did not deter Paula and her family from hoping for a bright future for Jordan.
“During those early years I was having to really educate myself and advocate strongly for him. That was an important piece because in educating myself, it really took away the fear and it allowed Jordan to have a better quality of life as a result,” she says. “That was really helpful for me. It was really therapeutic. I think through education and awareness it can really help the family.”

Jordan is the youngest child of Paula and Sam, who have supported each other through a loving marriage of 27 years. “My husband is my pillar,” says Paula. This couple have worked to guarantee the best possible life for Jordan, Their eldest daughter, Sarina was four-years-old when Jordan was born and loved being a big sister from the start. “Sarina is a fabulous role model and is very loving and compassionate,” says Paula. “When you have a sibling who is younger or who has a disability it does teach you an element of compassion and inclusiveness, so she has advocated for him as well.”

Despite the challenges that were presented to the family, Jordan has beaten the odds and taught his mom some valuable life lessons in the process. “Jordan has such a wonderful outlook on life, he has a wonderful spirit and his strength drives me,” she says. “If I had not had Jordan, I would not be the person I am today. He has given me courage and strength to take on each day and the hurdles in life we all face and to be brave about it. He has definitely made me enjoy life more. He lives simply and revels in each day.”
Jordan himself is known to be a charmer. “He is quite funny, a bit of a comedian you could say. His timing is really good,” she says. “Whenever he goes into a room he always leaves a bit of himself when he is with a group of people. He always makes an effort to make others feel good. That’s truly his personality.”

Paula understands fundamentally what other families in similar situations are going through. “My greatest lesson for anyone who has a child with a disability is to enjoy each day and when they reach a milestone, be proud,” she says. “Educate yourself on the prognosis and get support through awareness and understanding. Prepare for the future, but really live one day at a time. Enjoy each moment to the fullest.”

Advice we could all use.

Reprinted with permission from BCity Magazine, Fall 2014 issue

Story written by: Associate Editor Camille Lhosa for B CITY magazine www.bcitymagazine.com