Hello to our neighbors. This year's benefit game dinner will be for my daughter Addison. I thought it would be nice to give a short synopsis of our journey over the last year. We hope awareness will help Addison's future be even more successful.
Our daughter Addison is 4.5 years old. When she was 2.5, she began to rapidly put weight on. We spent a year meeting with specialists. We spent a couple nights at the hospital doing tests with no results. A few months later, Addison began to show signs of extreme hunger and behavioral changes. Shortly after that, she began showing signs of apnea during her restless sleeping hours. She would stop breathing for short periods of time. My husband and I began taking turns sleeping in her bedroom. We finally got a sleep study in January 2014 where they found she was dropping to extremely dangerous oxygen and heart rate levels. She was admitted into the PICU for observations and oxygen. We were initially sent home with a Bipap machine that eventually failed. We went back into PICU and Addison was showing signs of sever hypothermia. The doctors had mentioned just one week before that a tracheostomy would be needed if they Bipap failed. We made the hard decision to allow the surgery. Addison healed well even though she had some major complications during anesthesia. Just a few days later, Addison's many symptoms all added up to an incredibly rare disease called ROHHAD (Rapid-onset Obesity with Hypothalamus dysfunction Hypoventilation and Autonomic Dysregulation). She is the only case in the state of Vermont and one of less than 100 in the world. Along with this disease, a benign tumor was found in Addison's abdomen. After that surgery Addison's body could not heal itself and shut down. She went into complete kidney failure for 6 weeks. She did 6 weeks of dialysis to stay alive. She was attached to 20+ medications hooked into every part of her body. She made it. The beautiful angel is alive. Through these 6 weeks, Addison lost all of her life skills. She could no longer move, speak or breathe on her own. We made the choice to spend 4 months in NY at a Rehabilitation Center so that Addison could relearn the skills she had lost. Addison was weaned off her vent during day time hours. She will always need to be ventilated at night or if she is ill. Addison is still wheel-chair bound and only speaks a couple of words. She has therapies at home almost every day to regain her skills. ROHHAD causes many issues for Addison's body every single day. She needs nursing care 24/7 and j have been out of work this past year taking care of Addison. ROHHAD has no cure and is incredibly dangerous.
While we were at the rehab facility Addy had great experiences on a wonderful adaptive bike. Our hope is to be able to purchase one with the money we receive from the game dinner.
Event: Mar 7, 2015
For those who didn't see the last posting : Event Mar 7, 2015
Local food from local folks with local music donated by Underhill's own Eric Bushey and his band Bluerock Boys, March 7th at the Underhill Town Hall from 4-9pm. A family event with chef prepared specialties and great music will tantalize all ages as well as their appetites. As seating is limited please rsvp to Mike at fullem64@gmail.com and indicate how many will attend. Look for future posts prior to the event for updates.
This years menu includes last years favorites Bacon and Moose Sliders, Spicy Goose Stromboli , Venison Underhill (Philly) Cheese Steak on baked rolls, and hand cut fries. This year new items include a taco bar with crispy fried pike fillet as well as seasoned ground venison, man dip( seven layer dip) and smoked Alaskan Silver salmon. We ask as most of us hunters forget our veggies to bring a vegetable side or dish to share and your own beverages.
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