As most of you know my niece, Kylee was admitted to Mass General Hospital on Saturday, February 24th. She has been in and out of hospitals many many times but she has never been in this long before. She is in ICU and the doctors are still unsure of what is happening to her. She is having severe uncontrollable movements that are breaking down the little bit of muscle she has and is also causing her oxygen levels to drop. While in ICU she has coded twice because she stopped breathing. There have been many other times where her O2 levels have dropped and she needed oxygen. She is a warrior and she’s fighting. Kylee has faced a myriad of medical issues her whole life. She has polymicrogyria which is abnormal development of the brain before birth. She has frontal bilateral brain damage from birth. She is also deaf and blind. Kylee’s condition has been a medical mystery to doctors but they believe she has severe cerebral palsy. Kylee cannot stand or even sit on her own. She can’t eat or get nourishment without a feeding tube. She cannot talk or tell us what she needs or what is hurting her. Her being nonverbal is one of the biggest obstacles the doctors are facing in determining what is ailing her right now. She can’t give us any information to help her. Because of that she has had blood tests, CT scans, ultrasounds, and MRI’s. All of which have come back normal. Today Kylee is being heavily sedated with a breathing tube so that her body can rest from the movements and so even more testing can be done. The doctors have informed my sister and brother-in-law that she will be in the hospital for quite some time. Stephanie and Mike have been by Kylee’s side this entire time. Their commitment to her is inspiring. They have been incredible parents to not just Kylee but also Cameron and Collin. They have been juggling all of their responsibilities amazingly. Since the 24th they have been paying for hotel rooms (thankfully a friend has helped with rates but that cannot go on indefinitely). They have been paying for all of their meals for them and the boys when they come up. And of course paying their usual expenses like their mortgage, car, and utilities. The problem is both of them have been unable to work. And now with Kylee staying in the hospital even longer they are having a difficult time financially. They would never ask anyone for help so I am asking for them. I understand that times are tough for everyone but if there is any amount, honestly no matter how small, that you would be willing to donate for Stephanie and Mike it would mean so much. We can’t control the worry they have for Kylee but if all of us pitch in a little we can help ease the worry of things we can control. Regardless of all the challenges Kylee faces on a daily basis she is still such a sweet soul with a big personality. When she’s healthy, she babbles and tells us stories. She plays with her brothers in her own special way. She flashes that gorgeous smile of hers and laughs when she’s happy. She’s also sassy and lets you know when she doesn’t like something. All of those things make Kylee who she is. She is the light of our family and brings so much joy to everyone who knows her. She means more to us then I could ever express in words. We can’t wait for the day when she is back to her old self. Please consider donating to make this time a little less stressful. And please keep Kylee, Stephanie, Mike, Cameron, and Collin in your thoughts and prayers. Thank you from the bottom of my heart.

Gavriel Sosnowicz

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Erin and Nora

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Ruth and Steven Augusta

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Lacey Bluemel for Nora Hiltz

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