Help Anaias Walton and Family Through Crisis

My name is Darci Walton and this is my son Anaias Walton, aka "Nini." Anaias went into respiratory failure on 1-18-24; he had stopped breathing in the backseat of our car while I was driving him to school that morning.

Anaias was immediately admitted to Cincinnati Children's Hospital Medical Center onto the PICU unit. Nini spent the next two months in the PICU, medically sedated and intubated on ventilator support, fighting for his life. He was placed on ECMO because his kidneys had shut down, and without this, he wouldn't survive. There were several days throughout his PICU stay when I was informed, "these next 24 hours are minute to minute for him," and clergy had been called in to pray over my child.

Anaias fought long and hard, relearning to walk again after his body was so deconditioned from being bedridden for such a long time, and was able to return home!

Anaias has since spent the majority of his time in and out of the hospital. He has not been able to remain home longer than two weeks without having to return due to an upper respiratory infection or UTI turning septic.

I was also informed in April that my son is terminal because his lungs are no longer able to keep up with his continuing growth, and palliative care hospice was initiated.

In addition, on August 2nd, we returned home from a hospitalization for a respiratory infection, and immediately he was readmitted on August 3rd for urosepsis, only home for 24 hours! On August 4th, Anaias woke up in the hospital and attempted to get up and walk to the bathroom and fell to the floor. Anaias could no longer walk or bear weight on his right leg. We spent the next six weeks in the hospital trying to find out why he could no longer walk, and the doctors were unable and still remain unable to this day to offer an explanation as to why. The doctors were able to tell that all of his joints were inflamed and surrounded with excessive amounts of fluid, but unable to explain why his body was reacting this way. He still remains non-ambulatory to this day, and now crawling is his primary mode of independence.

He has severe sleep apnea, requires oxygen and CPAP support, requires being straight cathed throughout the day, and is non-weight bearing, requiring him to have 24/7 nursing care. He has continued to acquire urinary tract infections one right after another and usually requires hospitalizations as a result.

We have not been able to stay in our home longer than two weeks at a time before he gets readmitted from another infection of some sort.

I also lost my job on 1-23-24, less than a week after he became ill, and have not been able to go back to work since. I was receiving unemployment until it ended last week, which was helpful in keeping a roof over our heads. It wasn't enough, though, to allow me to stay current on all other monthly bills.

My unemployment has now run out, and I am still unable to return to work. Anaias requires 24/7 nursing care, and we have yet to have the nursing agency fulfill all those hours needed that would allow me to return to work. This is preventing me from being able to secure employment outside of the home. He is also in and out of the hospital so much, which requires me to stay with him because he becomes excessively behavioral towards hospital staff when I am not present. Therefore, I'm forced to stay at the hospital with him, and this also impacts securing employment. When I do leave him at the hospital, I always receive calls from the hospital staff telling me that he has escalated and they want to sedate him. He escalates because he is nonverbal, and staff doesn't understand him, and he has separation anxiety. It becomes stressful on all of us and interferes with his medical care, so when he's hospitalized, I am forced to stay all the time.

I am stuck in a very difficult place. I can't accept employment outside of home until I can be 100% certain he has someone to care for him at all times, and we just don't have that security right now.

I do receive food assistance, but I do not have the financial means to pay for all other monthly household expenses. I am unable to financially provide for my children now that I am no longer receiving unemployment. I am going to hire on with his designated nursing agency and fill a portion of his allocated weekly nursing hours myself, but the downfall to this is that when he is in the hospital, I will not get paid. I will only get paid to care for him if he is home, but again, he's in the hospital more time than he is at home. I also can't accept a full-time position outside the home because I don't have the nursing staff to care for him by others when I would need to be away for work. It's a catch-22!

This has been a very stressful year all around for us because of this, and I am consumed with financial worries every single day on top of the daily stressors that come along with caring for a terminally ill child.

I have two other children at home, Kevin, 15, and Amira, 14, who also suffer a great deal as a result of all this. They have been unable to enjoy their summer break and continue to suffer the consequences of their brother's illness. They understand, but I feel sorry for them as well because they too suffer the impact of all this.

I hate asking for help, but when it comes to my children, I have to set my pride aside because it's all about them! Any help that you can offer to help us get through this would be greatly appreciated by all of us!! ❤️