Be an Angel-Sinner's Ball

6405 South 3000 East,Holladay UT 84121

19 October, 2022

Description

Be an Angel will live up to its alter ego for the 11th annual Sinners Ball. This will be the premier Halloween costume party and this sexy soiree will transform Elixir Lounge into the ultimate Trick-or-Treat, where guests are invited to lose themselves to the sounds of the DJ. This Be an Angel event will be raising money for a sweet baby girl named Ivy Ella Davis who has a mitochondrial neurodevelopmental disorder called "NEMMLAS." You can red her full story below. There is a $20.00 entrance fee, which 100% of this charge goes to the charity "Children and The Earth.” We will also have a silent auction, and a professional photographer. Questions? Call/message Chad Anderson or Darren Bolingbroke. Be an Angel is the name of the party where we raise money for the official charity called Children and The Earth; they help Utah kids with overwhelming medical needs who don’t have insurance or poor insurance. The child changes every month, so come to our events to find out which child we are helping. Ivy's story: Our journey with Ivy has been very trying. We love her more than anything. We have fought to find answers since March of 2022. She was only gaining a couple ounces a week no matter how much she ate. She couldn’t hold up her head and wasn’t making the steps in her growth that she was suppose to. After 6 months of specialist telling us that all of the labs are normal, her brain MRI was normal, her heart EKG was normal we finally got answers. Our pediatrician told us to go to the ER at primary children’s because she wasn’t eating and she was having severe full body tremors. We were there for a week and because we had already done so many tests the genetic testing was the only thing left for us to do. We got the testing done and waited. August 15th, we had an appointment with the Geneticist at Primary Children's and they told us that Ivy has a Mitochondrial Neurodevelopment disorder or another name for it is Wars-2 Associated disease. The scientific name for this is called Mitochondrial neurodevelopment disorder and abnormal movements and lactic acidosis with or without seizures, or for short (NEMMLAS). It was passed by me and Timmell who both carry a mutation in that gene. Since both of us have that mutation in our genes it gives all of our children a 25% chance of getting it each pregnancy. We are currently waiting for results to see if our 2 year old has this as well. Because she has not shown symptoms yet her case could be less severe. Ivy’s condition is the most severe on the spectrum because she was diagnosed at 10 months. It is very rare and there are only a few other known cases. There were 4 other kids diagnosed before the age of one and none of them lived past the age of 4. The kids that have it have are on their own growth curve. They all have global delays but each case varies. There is no cure for it because they don’t know a lot. There are some supplements she can take. They just treat the symptoms as they get worse. The symptoms that Ivy has are as follows, full body tremors, low appetite, global delays with growth and cognitive development, and limited motor abilities. She has a feeding tube because when she was eating on her own she aspirated a lot and there is always fluid in her lungs because even with the feeding tube it goes into her lungs when she burps it up. She has severe acid reflux as well. We have been doing PT since March and we will continue to do PT, OT, Speech Therapy, and we have Nutritionist as well. We do this with Kids who count and Primary Children's Rehab. She still is not able to hold her head up on her own or roll over on either side. She was able to roll over sometimes before she had the feeding tube but she hates the feeding tube and it has drained her of energy. She rips it out very often but I know that is good that she is putting on weight with it. We will be getting a Gastrostomy feeding tube to replace her NGI tube she has now. The NGI tube is suppose to be temporary to help supplement her feeds but since we have gotten it she has stopped eating orally all together. Because of this they will do the surgery so she can eat orally if she still wants but it isn’t as invasive as having a tube on her face. They are wanting to do a surgery for her acid reflux as well because she projectile vomits at least a complete feed of fluids a day. They currently don’t know how safe it will be yet for her or if they want to do both procedures at the same time. We are meeting with Dr. Tuft who is a Gastrologist and the surgeon team at Intermountain Utah Valley Hospital to find the best way to do this for Ivy. The surgery will most likely take place at Primary Children's. She has gained weight since putting in the NGI tube which is great, so I’m grateful she is growing. This has been a lot to take in but I just want to soak in every minute with my sweet baby. ❤️ We have felt that getting a support dog would greatly help our family at this time. We are very excited about this opportunity. We have found a sweet Austrian Shepherd that we want and we will name her Ollie. Thank you Angels for all your help.