Madison Patricia Roberts ( Maddy) was born June 17th, 2006 in Minneapolis Children’s hospital. Maddy was born with Charge syndrome which is a gene disorder, that affected her eyes, nose, heart, and her stomach. When she was born she was half blind, half deaf in one ear and deaf completely in the other, she had a stomach the size of a pinhead and did not know the meaning of hunger so she had a feeding tube placed in her intestine, and her heart had a leaking valve. We all knew as her family that she should be returning to the hospital one day to have open heart surgery. I think we were all preparing for that outcome versus the one we were surprised with. But, despite Maddy’s medical history she was one of the strongest people I ever knew, for years she had grown stronger since her birth and was acting just like a healthy child the only thing that people could see that was different with her was that she was half blind and half deaf. Maddy loved the water so much. When She was living in Sauk Rapids, she lived in these apartments with a pool outside and her older brother and older sister loved taking her in the water, all she did was kick and kick her legs in the pool. When she moved to St.Cloud she did not have that pool anymore, but her mom and her sister still took her to the community pools and she would just love to float on the water and go under despite the panic that it caused her mom and sister. Maddy was a very spunky little girl and was very much a tom boy who once in a while liked when her older sister would put makeup on her an example is the profile picture for the website. Maddy loved wrestling with her brother and all her boy cousins. She loved watching the Vikings football with her dad. And she loved watching funny little videos on youtube in the kitchen while her mom made dinner. Maddy did not have a feeding tube for a long time, but she still had problems with chewing her food so maddy ate a lot of soft food. And her favorite was mashed potatoes and gravy. Maddy also really enjoyed going to school, she was in fifth grade at Mississippi Heights elementary school, she made a lot of friends in the school and she loved them all. Maddy always was excited to see Pam, her intervener who helped her throughout the day and signed with her. Maddy was not a big fan of the cold, but she did like making a snowman. Maddy also was not a huge fan of the pets in the house, but she was able to put up with them. At home she also had a list of her favorite things to watch which was: Sponge Bob Square pants, Babe the pig, Inside Out, Caillou, The Wiggles, Moana,The Toy Story series, and Charlotte’s Web. The one thing that always stood out for Maddy was her attitude. She had no problem telling you what she wanted, when she was born the nurses that took care of her before always said “ if it ain’t Maddy’s way, it’s the highway”. She was not one for patience. Maddy had to be told multiple times a day usually to be patient. She did not like to wait. Maddy also loved to go shopping with mom for new toys, so she loved going to Wally World ( Walmart) so she would get to pick out a new toy. When Maddy had a favorite toy or item, because it switched all the time, she would have it with her when she would take a bath ( if it could go in the water) and she would have it with her when she ate all her meals and when she went LaLa ( naptime/bedtime). It was always a challenge when the item was a balloon or was multiple dolls. But despite how healthy Maddy seemed, she was not immune to catching a bacteria. On the last week of December of 2017, Maddy was showing signs of cold/flu like symptoms. She was still talking and walking but she was very tired, and did not eat much of anything. When she returned from spending the new years with her dad, Maddy was moaning and whining a lot. The following next days Maddy became less and less coherent, she could not walk, could not talk, or even open her eyes for a long period of time by the time we took her to the St.Cloud Hospital ER. That entire day, January 5th, Maddy was in the St.Cloud Hospital. At the hospital maddy was given antibiotics and fluid, and when they realized that wasn’t doing much of anything for Maddy they decided to try and stabilize her to airlift her to the Children's Hospital in Minneapolis. Before the helicopter landed, Maddy’s heart had stopped, but they were able to resuscitate her. All of her family and loved ones who were able to, drove down to the cities for Maddy. When her family reached the hospital were they weren’t given much hope with Maddy’s situation. All of this took everyone by surprise. Maddy was given two choices by the doctors at the Children's hospital. She could continue with the method that St.Cloud was doing, or she could try and get hooked up to a ecmo machine to try and by her some time while we wait for the antibiotics to stay in her system. The machine is very risky and we knew there was a high chance we would lose Maddy during the procedure. But we decided to use our last hope. The procedure is about an hour long, but because of Maddy’s past the procedure took about three hours. Maddy was hooked up fine and for the most part stabilized it seemed. On Sunday January 7th, Maddy was diagnosed as brain dead. All of her family that could come, came to say goodbye to their crazy little girl. This entire situation has thrown everyone who was close to maddy for a loop. The family takes pride in being strong and independent, but anything literally helps even if its prayers and thoughts. We are so grateful and heartbroken for Maddy. And I ( big sister) wish the world could have gotten the chance to meet her.