Hugs 4 Alaina

For: Alaina Shelsta
Richfield, WI
Organizer: Chris Shelsta
Hugs 4 Alaina (Alaina Shelsta)
$16,780
of $20,000 goal.
Raised by 158 donors
83% Complete

The Story

Alaina Shelsta is the eleven year old daughter of Paul and Chris Shelsta. The family live in Richfield, WI.
She has been diagnosed with a rare genetic disorder that can be life-threatening known as Glucose Transporter Type-1 Deficiency Syndrome (GLUT1 DS).  This disease is known as severely debilitating and is characterized by seizures, developmental delay and movement disorder. Although there is no cure for this condition, last year Alaina did try one of the two treatments available, the ketogenic diet. Unfortunately, this didn’t work for her body.  She is currently on the modified Atkins diet and taking medications, and being closely monitored by her doctors.  In spite of all of this, the family were recently told that her condition is worsening and the only known treatments are not working for her.  Alaina’s doctor, Dr. Kurt Hecox, from Children’s Hospital in Wisconsin, reached out to Dr. Darryl DeVivo in New York City.  Dr. Darryl DeVivo is the well known “top of the world” neurologist doctor who discovered GLUT1 DS (this disease is also known as the DeVivo Disease) in 1991.  Alaina is very fortunate that Dr. Darryl DeVivo has agreed to help find a treatment that might help Alaina.
There are a lot of unknowns and uncertainties with Alaina right now, but through this all her spirit remain positive.  She continues to be a cheerful and loving little girl.  She loves her family, her stuffed animals, reading books, and playing softball and basketball.  She gives the best hugs!
Alaina needs your help. Your support will help fund the search for a treatment that will help her live a more normal life. A treatment that will give her hope and the potential to be able to fulfill her dreams of becoming a nurse and helping other people, the way that they now help her.

Fundraiser Updates

Posted on December 9, 2017

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Posted on December 9, 2017

Everyone has been very busy since coming back from New York. With all the recording of daily values, seizure activities and diet it has been tiring for everyone. Only one more week until the family go back.  These final days Alaina is wearing her device on her wrist, which records data that will be part of the evaluation of her suitability for the study.  Her food intake in these final days has to be precisely measured and recorded. Everything needs to be weighed out and broken down into fats, proteins, and carbs for each item she eats or drinks.  Alaina's seizure medications are also being carefully monitored by Dr HeCox to ensure that she is kept out of the toxic range, but doesn't go so low that she experiences seizures. The family flies out to New York next Monday and will find out on Tuesday if Alaina will be accepted into the trial. They ask for your prayers and support at this time, not only for safe travels, but also for good news about the trial.

Posted on November 13, 2017

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Posted on November 13, 2017

Its been a little while since the Shelstas returned safely from their trip to see Dr DeVivo and his team in New York. After a little sightseeing the first day, including a stop at the Hard Rock Cafe on Time Square, day 2 was spent at the hospital. The main aim of this initial visit was to work on establishing a baseline of data for Alaina. Apart from a few short breaks the family spent all day with a variety of specialists that are working with Dr DeVivo, including a wonderful dietitian, who made Alaina very happy when she told her that she could eat cheerios. During all the meetings and explanations of the testing equipment, protocols and reporting requirements, Chris and Paul learned that Alaina will be one of only ten patients that will be part of this study. There will only be forty worldwide that will be part of this study into the cognitive and developmental factors of GLUT1. They feel so blessed to be given this opportunity. 
So now they are home, what's next? Well there are 6 weeks of monitoring and reporting Alaina's episodes and general behavior. All of this information as well as some specific food and test data will form the baseline that will be used to measure changes that occur during the study. Next trip to New York will be December 11th. This is the crucial trip when they will learn if Alaina meets the criteria to be included in the study. If she is accepted she will be the first patient in the study. Thank you for all of your continued prayers, messages of encouragement and financial support. You are making it possible for this family to advocate for Alaina and for her to receive treatment from the absolute best doctors and specialists in the world. THANK YOU!


Posted on November 1, 2017

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Posted on November 1, 2017

Early this morning the Shelsta family flew to New York for their consultations with Dr DeVivo tomorrow.  They arrived safely and are anxious to see what tomorrow will bring.  We ask that the entire Hugs 4 Alaina family and friends not only keep the Shelstas in their prayers and thoughts, but that they also send their prayers and messages of support to the families that have been impacted by the terrible and senseless attack in lower Manhattan today. 

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