Hugs 4 Alaina

For: Alaina Shelsta
Richfield, WI
Organizer: Chris Shelsta
Hugs 4 Alaina (Alaina Shelsta)
$16,505
of $20,000 goal.
Raised by 155 donors
82% 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 October 5, 2017

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Posted on October 5, 2017

In the photos and video gallery you can now watch the video of our fabulous Bags tournament event that took place on the 23rd September. We thank all of our volunteers, donors and players for making this such a special event for Alaina.  The family were once again in awe of all of the love and support of the people from their local communities. Hugs 4 Alaina has not only had local impact though, people from all over the USA have taken this family into their hearts and have given their financial support but have also shown their love through messages, cards and sharing Facebook posts and information.  THANK YOU !

Posted on September 27, 2017

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Posted on September 27, 2017

ONE HAPPY HAPPY GIRL ! Alaina and her family were able to go home this evening. All three specialists have been in consultation and feel that there is potentially another genetic issue that is making Alaina's case "unusual". They will continue to evaluate the data and test results to see what they can do for Alaina from now until the trial in Texas at the end of the year.

Posted on September 27, 2017

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Posted on September 27, 2017

Earlier today still up at the hospital waiting for Dr Hecox, Dr DeVivo and Dr Pascual to figure out what to do next. Alaina was still enjoying reading the wonderful cards and messages, they really do lift her spirits.

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