NJ boy with cerebral palsy desperately needs medical equipment

No one who loves a child should have to see what the Kulesas of Jackson have seen. Their little boy, 8-year-old Jake, suffers from cerebral palsy.

If you’ve seen cerebral palsy cases firsthand you know the pain. Weakened muscles. Tremors. Sometimes the inability to walk or speak. It’s heartbreaking.

Shannon Kulesa was told years ago her son Jake would never walk. But this family didn’t give up and Jake ended up through a lot of hard work, able to move about with the aid of a walker.

Last fall she took him and his brothers on a family outing. After a day at Great Adventure Jake collapsed. Shannon helplessly watched his muscles visibly contracting and spasming. It took hours before the excruciating spasms would stop and a week before Jake could walk without tears.

Then soon it happened again when playing with some buddies.

For a family who’d already seen enough, it was too much. They would try anything. Shannon heard that a hyperbaric oxygen therapy chamber could help.

The stars aligned and she was able to borrow one from a father in Manalapan whose son has muscular dystrophy. He started JAR of Hope, a nonprofit, and because they were involved in muscular dystrophy research he had two hyperbaric chambers. One he loans out on the basis of need.

The Kulesas were able to borrow it from April until June until a more urgent case came along. Jake spent five or six nights a week for two hours a night inside it. In that time it was like a miracle. Jake had no spasms. None. He was able to come off all pain medication. He was sleeping better. His back no longer hurt.

The Asbury Park Press tells the sweet yet sad story of how one day little Jake asked Shannon, “Mommy, do you know why my back doesn’t hurt anymore?”

Now they’re trying to purchase this life-changing hyperbaric chamber for him permanently but they’re costly: $25,000. It’s not covered by insurance. They’ve come up just $6,000 shy of the goal.

JAR of Hope is helping raise donations for the family so Jake can feel better again. He’s not doing well without the chamber. The Kulesas have already been through two surgeries with Jake and lots of therapies and their uncovered medical expenses run up to $15,000 a year.

To donate contact JAR of Hope at 732-414-6670 or see their website jarofhope.org and ask specifically about helping the Kulesa family. A little boy named Jake in Jackson could get some of his childhood back if you could help.

The post above reflects the thoughts and observations of New Jersey 101.5 talk show host Jeff Deminski. Any opinions expressed are Jeff Deminski's own.