Family with 2 Terminal Kids Needs Help

2 years ago when this campaign was created, it was to fund our trips from Kentucky to New Jersey for a few weeks every 6 months while my children participated in a clinical trial. In the beginning we saw progress, but we eventually stopped seeing improvements. We hoped it would be the cure for our children, but it wasn’t. And while we’d like to pursue other treatment options, right now we just want to spend as much time as possible with our kids. For those that don’t know, Riley & Harrison have been diagnosed with Infantile Neuroaxonal Dystrophy (INAD). It stops their nerves from working so they can’t move or talk. They start out normal but slowly lose their abilities. They stop walking, eating, talking ... until they’re essentially trapped in a body that doesn’t work. They have nerve pain and muscle spasms. They’re going blind and deaf. They’re basically paralyzed but floppy as newborns and need to be repositioned to prevent pressure sores. They’re fed through g-tubes. They have to be catherized 4 times a day. They sleep with oxygen. They choke a lot and have to be suctioned. Taking them anywhere these days is difficult. We have nurses on the weekdays while I finish my masters degree, but nights and weekends are different story. My husband and I take turns staying up with the kids. He sleeps 2 nights while I stay up and then I sleep 2 nights while he stays up. It’s been years since either of us have slept more than 3 consecutive nights at the same time. It’s not a fun reality, but we do whatever necessary to keep our children safe. You might not know this, but in 2012 (a year before my husband and I got married) he had an endoscopy. They took a biopsy of his stomach but didn’t cauterize the site correctly, which caused his stomach contents to leak into his abdominal cavity and lungs. His lungs collapsed, he had emergency surgery and he was in a coma on a ventilator for several weeks. The incision from his sternum to public bone that had severed his abdominal muscles was not growing back together. He had a hernia that made his belly the size of a pregnant woman. The biopsy turned out to be cancerous and we were sent to Duke cancer center. They looked at his hernia and their eyes bugged out. “We can fix it” they said. Well... they didn’t. After another surgery, his hernia remained. My husband has seen specialists over the years and has been told his hernia is inoperable. For 8 years he’s been living in constant pain. He still has no abdominal muscles, yet he has 2 severely disabled children who are as floppy as newborns that need to be picked up, moved, repositioned etc. (Life is cruel sometimes right?) He has to wear an abdominal binder (girdle) to hold his stomach in & the lack of muscles is now taking its toll on his back. On top of my husbands medical issues, we also have medical needs for our children. They’re getting too big to bathe them on my knees leaning over the tub. We need to renovate our guest bathroom to be ADA compliant. We have a large jacuzzi tub that isn’t used, and I’d like to take at it out and put a roll-in shower in the footprint. We also need a wheelchair ramp for our van. We pay out of pocket for a lot of their medical needs. We still have medical bills from my husband’s surgeries and following complications. I am not able to work because someone needs to be home, Jason is the only one working. If he has surgery to repair his hernia, he’ll be out of commission for a while. All the while, we’re watching our younger 2 children get worse. Prognosis is not good, life expectancy is 8-12 years old with cause of death being respiratory failure. And our oldest daughter is growing up with her siblings being the center of attention. Not because they’re the favorites. But because rushing to their side to suction them when they choke usually takes precedence over casual interactions. She’s 15 and we feel like we’re losing her because we rarely have time to be a family. I’m just asking for some help so we can make things a little easier for our children and for the people who take care of them.