Hi-My name is Mckenzie and I am here to tell you about a special girl named Neyibi that was in my daughter's Kindergarten class at Harbordale Elementary. I not only got the pleasure of getting to spend time with her, but have had my life forever changed by the resilient story of her family, that I have gotten to know under the worst of circumstances. I would like to share with you what they have so openly shared with me, in hopes that if your circumstances allow, you can help this family, keep them in your thoughts and prayers, or at the least, realize how fortunate we are and learn from them as they live out a parent's worst nightmare.

Neyibi Monroe was born in Bluefields, Nicaragua to a large loving family and quickly became the center of their universe. Her bright smile, laughter, and love of people captured the hearts of everyone she came in contact with. She never met a stranger and even her neighbors soon became "uncles".

When she was just over a year and a half old, her family went on a vacation to the beach. They spent the day playing in the water and collecting shells, some of her favorite things to do. No one knew that the next morning, their lives would be forever changed. When Neyibi woke up, one side of her face was extremely swollen and her eyes were almost closed. Her mother, Maryan, rushed her to the pediatrician. Unfortunately, they could not provide any answers. They called countless places in search of someone who could help, to no avail. Finally, they got word that there was a doctor in the capitol who had seen this before, so they started what would become a very long journey to help their beloved Neyibi.

Just to put what they were experiencing in perspective, the average salary in Nicaragua is $200 a month. They lived 8 hours away from the capitol. Each bus ticket, round trip, per person, was $40. The doctor's visit was $50 every time they saw her. That doesn't even account for the cost of medicine, food, or housing once they were there. The first time Neyibi went to this doctor, she stayed in the hospital for over 60 days. The whole family started to pool together all resources and everything they had to make sure that she had the best available care, which I think is such a testament to what a special little girl she was and how much she was loved.

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he doctor told Maryan that she had Ocular Myasthenia Gravis, a neuromuscular autoimmune disease and that they had only seen 2 other cases in the whole country. Her facial muscles were spontaneously weakening, but the doctor assured that with aggressive medical treatment, she could expect to live a normal life and even see improvement. With Neyibi's treatments increasing and the medical cost becoming crippling, it became apparent quickly that even with the family coming together, they would not be able to sustain the treatment she needed long term. Kenya, Neyibi's grandmother, made the difficult decision to leave her two young sons with the family and come to America so she could work and send money back to Nicaragua so Neyibi could get the treatment she needed.

As Neyibi got older, they would have to add in strong steroids and increase her dosage of medicine, leading to harsh side effects, blindness, and double vision. Despite all of this, Neyibi still was the bright shining light of her family, singing, dancing, and smiling through everything she was trying to overcome, never complaining. Unfortunately, the condition progressed and she started to have weakness in her arms and legs. She became unable to cough, sneeze, vomit, or eat foods that were difficult to chew and swallow.

Her parents knew that they needed to do something to get Neyibi better care. In June of this past year, they made the difficult decision to leave Neyibi's father, family, and their whole world in Nicaragua to come to the US so she could get more advanced care. It was hard at first because Neyibi missed her family and everything she knew, but was so excited about starting school and making new friends in Kindergarten. Her mother would carry her to school in the morning to help save her strength, then walk all the way back to the school everyday at noon to give her her medicine. On a good day, she would get to carry her back home at the end of the school day but often, would get a call to come get her early because Neyibi was too weak.

Unfortunately, the referral that they had been waiting and fighting for, the one that they had given up their home and their country for, the one that was with a neurologist at Joe DiMaggio on Feb. 24th, was too late. 

The weekend of Feb. 10th was normal- like any other weekend. They went to Dania Pointe, had ice cream, swam at the beach, and collected shells. The shells that were still in a little bucket in her room on Feb. 15th, as I sat on Maryan and Kenya's couch, while they opened their hearts to me and we shared stories and tears as they showed me pictures of their little girl who was gone. That Monday, Maryan told me she decided to keep Neyibi at home from school after she had a small fever, less than 99. Neyibi was so worried that she was going to miss Valentine's Day at school and wearing jeans. Her mom assured her the party wasn't on Monday but on Wednesday and she wouldn't miss it. All Neyibi had been talking about was how she was so excited about bringing all the cards to share with her friends. Her fever came down and she made Neyibi some lunch while she watched TV in her room. When her fever came back, she decided to call an Uber and go to the hospital to make sure everything was ok. On the way to the hospital Neyibi's eyes started to close. Maryan became frantic. She picked her up and ran into the hospital where she had a doctor grab her from her arms and start yelling for the staff. Maryan sat there waiting for her mom to get there, not knowing what was happening with her daughter. 

As we sat on the couch, Maryan, relieved the greatest fear of any parent as the tears streamed down from both of our faces. As those tears turned into sobs, I will never forget the look on her face as she described seeing the hospital staff close the white curtain. The look of total confusion. Why? How can one minute your child be here and the next they are gone? How can in one second you lose your whole world?  I think Claire, my daughter, when I was trying to explain what happened to her friend, said it best- "How can she die? She is only 5. She is just a kid." 

I sat there and I didn't know what to say to Maryan and Kenya. There is nothing you can say that can ever erase the pain of losing a child. I tried to put myself in their shoes, so maybe I would know what to say or do to help them. I imagine it would feel like something is crushing you and you can't breathe. Just like I didn't know what to say to my daughter, because it isn't fair that a little girl, with a love for numbers, dancing, poufy dresses and sequins, doesn't get another birthday. Neyibi never got to go to Valentine's Day that Wednesday with her friends.

Unfortunately, we can not make this world fair. But, I believe we can come around this family and show them that a school and a community are thinking of them and want to help them remember their little girl. There are a lot of medical bills, missed work, travel, and services that are extremely costly. All her dad wants to do is be able to hold her again, and I ask that you help us make that happen. Please keep them in your thoughts as they learn to navigate this painful new reality, and if anything, hold your loved ones a little tighter, see how lucky we are, and appreciate what we can lose in a matter of seconds. 

Thanks- Mckenzie