Hockey game fundraiser to help Baby Nolan

BERKELEY -- Local law enforcement communities and Newark Family Foundation are sponsoring a hockey game fundraiser to benefit Baby Nolan, who is diagnosed with KCNQ2 epileptic encephalopathy.

The charity game will be held from 3-6 p.m. on Saturday, Aug. 25, at Jersey Shore Arena, 1215 Wyckoff Road, Wall. Tickets can be purchased at the door and are $10 for adults, $5 for children and free for those age 5 and under.

Nolan was born this past February at Community Medical Center in Toms River, and within hours of his birth, he began experiencing seizures. He was immediately transferred to DuPont Children's Hospital in Delaware, where he and his parents, Thomas and Kara (Ryan) Boulter, spent the next three and a half months. Nolan is their second child.

Nolan's diagnosis is very unique, with approximately 500 known cases throughout the world, and only four known with his particular variant. While his prognosis is not clear, it is believed that Nolan will be severely disabled.

Nolan’s seizures have been very difficult to control, according to his mother. He is on three seizure-control medicines and a ketogenic diet for his seizures. At six months of age, he is showing severe developmental and motor skills delays.

"He will probably be nonverbal and unable to walk. I may never hear my sweet son say 'Mama' or watch him run and play with his big brother, but I will never quit on him," said Kara.

"I will give him every ounce of my effort and love until my last breath. I have him in occupational, physical, speech/feeding and developmental therapies, as well as chiropractic care," she said.

His battles continue to mount. Nolan is followed by pediatric neurologists, orthopedic surgeons, gastroenterologists, a neuro-ophthalmologist, endocrinologist, pulmonologist, hematologists and a nutritionist.

Twice, doctors have told Kara that in Nolan’s short six months of life that he should have died.

"Nolan is the strongest person I know, and he stands true to the Irish meaning of his name, 'Champion' or 'Fighter,'" said Kara.

Kara, who has served over 10 years as a Federal Law Enforcement Officer, has a passion for assisting people, so it feels different to be the one who needs help now.

"I find myself feeling helpless in many ways," she said.

"To help my family face our challenges, my colleagues have come together and organized a charity hockey game event that will help us manage Nolan’s long-term medical needs and raise awareness about little warriors like Nolan with KCNQ2," Kara added.

Tickets will be available at the door or contact Eric Johnson at 973-997-1863 to pre-purchase them.

If you cannot attend the game, but still would like to make a donation, please visit the PayPal account karaboulter@yahoo.com.

After the game, the charity event will continue at Asbury Park Ale House at 7 p.m., where there will be food, raffles and more. For more information, visit www.njalehouse.com.