Basketball teams, community honor 5-year-old battling Batten’s disease

​      Jack Wang, 5, in wheelchair, is surrounded by family and friends at a fundraiser held in his honor at the BGM vs. HLV basketball game on Tuesday, Dec. 13. The event raised $2,500, which included a $500 donation from Chris’ Heart Fund, to help the Wang family with transportation and medical costs related to care for Jack, who was recently diagnosed with NCL2, also known as Batten’s disease. Joining Jack are, from left, front row: Jack’s parents, Mike and Lisa Wang and his sister, Dacia Wang. Middle row: Sharon and Jim Wang, Jamie Wang and Randy Masterson. Back row: Brad and Dawn Hamilton. Submitted photo.

By J.O. Parker
 
        Fans from both BGM and HLV not only came to watch their teams battle it out on the court last week, they were there, dressed in “Attack 4 Jack” shirts and with open pocketbooks, to honor Jack Wang.
Jack, the five-year-old son of Mike and Lisa Wang and a preschool student at BGM, was recently diagnosed with NCL2, also known as Batten’s disease.
     Batten’s disease is a very rare and rapidly progressing brain disease. It is an inherited disorder that primarily affects the nervous system. It is a fatal disease and there is no cure.
       “Jack is a sweet, loving and happy boy,” said his preschool teacher, Shannon Arment. “His smile will melt your heart and his laugh and giggles are contagious.”
      “Jack loves animals, especially farm animals,” Arment added. “His favorite song is Old MacDonald and his face lights up when you sing it to him. He loves listening to music and watching any Disney movie. He enjoys listening to books especially books with animals. He also likes playing with dinosaurs and going to the zoo. Jack loves seeing his friends at school and gets excited when they come up to him and greet him. His friends love seeing him, too.”
      At the age of three, Jack had a major seizure and was diagnosed with Lennox-Gastaut syndrome, which is a severe form of epilepsy. Even with seizure medication, Jack continued to have seizures. Jack has had many doctor’s appointments concerning these seizures.
     “His motor skills began to regress,” Arment said. “He was having difficulty standing, walking, picking up things and talking. He was also having trouble eating and drinking. Over the past year, Jack has had significant regression of gross and fine motor skills and speech. With the results of his last MRI, doctors were concerned that Jack had a neurodegenerative condition.”
Hope for a cure
       Even though there is no cure, there are treatments Jack can receive that will help slow down the disease. On Dec. 8, Jack had surgery and had a port implanted into his head. On Dec. 19, he received his first treatment through that port. Jack will continue to receive treatments every two weeks.
How you can help 
      Jack is the brother of Krya, Haliey, Dacia, Lynk and Vayda. Haliey is a member of the BGM Lady Bears basketball team.
      A fundraiser held at the game raised $2,500, which included $500 from Chris’ Heart Fund. Chris' Heart Fund benefits local families who are facing disaster or hardship by meeting immediate needs to lessen the burden of a crisis. This fund honors Chris Keller's legacy of caring by turning tragedy into action to help others. 
      “What a great night honoring Jack,” said Arment. “Thank you to everyone who came out and supported Jack and his family. Small town communities are the best.”
      If you would like to help Jack and his family with a donation to help cover transportation and medical costs, contact the First State Bank in Brooklyn. 
Editor’s note
        Much of the information in this article was provided by Shannon Arment, BGM preschool teacher.

      Jack Wang, 5, is shown with his BGM preschool teachers at the BGM vs. HLV basketball game on Tuesday, Dec. 13. They are, from left: Brenda Day, Traci Williams and Shannon Arment. Submitted photo.