Zander and the SheilaRoo

Zander is sunny 8 yr old who loves bugs, playing outside, and anything to do with a BUS! He also has a rare genetic condition called Prader-Willi Syndrome, which effects his ability to grow, inhibits his responses to danger, leaves his with an extreme lack of self control, and the most concerning of all, Hyperphagia. Or the desire to eat ALL. THE. TIME. Even when he is eating, he feels hungry. The type of hunger you feel after being stranded in the desert for 4 days and eating nothing but a few bites of some sour cactus. His entire Endocrine system is compromised and doesn't work properly; a slow metabolism, low muscle tone, and decreased hormone production means he requires approximately half the calories as his peers. His whole body tells him that he is starving, constantly, to the point that he would eat himself to death without supervision. We must provide careful calorie and nutrient control for Zander and he lacks the ability to vomit or feel pain the way a normal person would when overeating. The risk of death from binge eating is very high, it accounts for an alarming number of deaths in his syndrome each year. He does not feel danger like a typical child does. When he was a toddler, he preferred to go with anyone who walked by rather than his family members, he lacks the response to experience "Stranger danger". Now that he's older, he will fearlessly try to cross a street if he is able to without concern for the cars rapidly whizzing towards him.


As Zander has gotten older we have been experiencing a huge increase of what are called "elopements"; he will find any means of escaping, and run away in hopes of obtaining food, or just because he's mad, and can't reason with his impulse to run. As he grew, so did his hunger, and lack of self control, he has gone to many extreme lengths in his search for food. While we carefully monitor his calorie intake and attempt to provide him with the security of knowing that he will be getting a meal or a snack every two hours, his body is telling him that's he's starving to death every waking second. At a young age, we started locking the pantry and installed a set of double dutch doors into the kitchen. As time went on, we graduated from latch locks, and simply locking the bottom half of the doors, to keeping all doors into the kitchen locked up, and all food out of sight, we kept a key on us to enter the kitchen, bathrooms, and even our bedrooms, at all times. In the past he has eaten unlikely items such as a bar of soap, lotion, tubes of toothpaste, beauty oils, hand sanitizer, the list goes on. These measures worked until we started waking up with him trying to stealthily slide the key from our arms. So we installed biometric locks on the doors to rooms he absolutely can't access. Then he started figuring out how to get out of the main doors out of the house. At first this was simply to try to see if the back kitchen door had been open so that he could sneak in and eat anything available, he would eat any thing he could get his hands on, even flour straight out of the bag. Then one day he discovered nothing was really stopping him from leaving the property. Which was unfortunate not only in that he crossed main streets when he was basically the size and capacity of a 3 year old, but in that the very kind lady at the coffee shop he made his way to, felt bad for him and gave him all manner of treats, including his own plate of whipped cream, and a muffin and a cookie, which are normally forbidden to him as he also has Celiac Disease. This encouraged his behavior and reinforced the idea that leaving home resulted in FOOD. We immediately ordered some huge red siren alarms to install on all exterior doors in the hopes of thwarting his escape attempts. This resulted in many many failed, and a few successful escape attempts, resulting in calling the police to locate him. He flatly refuses to wear or carry any type of GPS tracking device or identification bracelet, and as of ye, we have not found something we can attach to him that he can't simply remove. Lately, he has resorted to trying to escape from the upstairs windows; on one occasion he managed to slide down the roof to the camper and clamber down the back porch; in another he managed to smash his fingers in one of our old farm house style window. My poor mother was convinced he had completely smashed all of his fingers. We have gone through the available options for securing the windows, even screwing the screen frames into the windows. We have explored every available method of securing our windows. Unfortunately Zander is extremely clever, and all of them have some type of "safety" feature that he has been able to figure out on some other type of security device. Alarming the windows would work in the winter, but the only way of cooling our upstairs enough for Zander is to have the windows open with fans in the windows, and most of his escape attempts are during the day. We live on the coast in Southern California don't have air conditioning, and Zander's hypothalamus doesn't provide proper thermal regulation. He experiences extreme changes in his core temperature rabidly based on the temperature of his environment.

We have depleted our financial resources; attempted to get help from our regional center (there is simply no more funding, not even for a better alarms system); and have mentally and physically exhausted ourselves (Lord, can I please have some sleep!) The changes to our lifestyle to simply attempt to keep Zander safe have been drastic and emotionally draining and trying on all of us, but especially Zander's twin sister and older brother, who have never experienced a "normal" childhood. They struggle to understand why they are angry or frustrated with our jailhouse lifestyle, and don't realize that there could be another "normal". After long deliberations about the effectiveness of our available options, and talking with law, and fire officials about what is legal and safe to use in your home, we have decided that the best, and probably only, option is to get Zander a Service Dog. A Service Dog would be able to keep Zander contained in "safe zones" and alert us when he is attempting to break past her "hold" on his possition. She would be able to alert us to his movements at night, when he is trying to get away. She would be able to keep him out of the "unsafe zones", and to provide a distraction and a companion to help sooth and entertain him when he is having a melt down. She will be fully scent trained, and will be able to track him if he should escape, or hide in a place that we can't find him. (Service Dog's have working hours like people, you can't work them 24 hours a day, and she will need a break!)There are many options, but none that posses the ability to help keep Zander safe and out of a care facility, than a Service Dog!


The trainer I have been talking to and working with found a dog match for Zander! Her name is Sheila, she's a 4 yr old Black lab, and is going through the necessary training right now! She should be ready in 8-10 weeks, sometime in the beginning of July. The cost of a service dog is high usually in the neighborhood of $13-15,000, and I have amazingly found someone who is giving us a great deal! But we need to raise the money rapidly to cover her costs, and to bring her and the trainer out here so we can finish her training in our home! I am looking to my friends, family, the kind hearted, and those familiar with the extreme nature of living with Prader-Willi Syndrome to help us get this life saving dog for my Zander! Any amount helps, from $1 - $1,000, and we will be just as grateful for any amount! I believe that nothing in this world is impossible, and I have seen it come to pass! To show our gratitude, I am including some "rewards" that I will give to those who can contribute more to our cause. If I could send something to everyone I would! And you have all earned our undying gratitude and thankfulness!
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Organizer

Amelia Batt 
Organizer
Ventura, CA
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