Hugs 4 Alaina

For: Alaina Shelsta
Richfield, WI
Organizer: Chris Shelsta
Hugs 4 Alaina (Alaina Shelsta)
$17,509
of $20,000 goal
87% Complete
Raised by 163 donors

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 June 11, 2018

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Posted on June 11, 2018

Its been an up and down couple of weeks since returning from New York. There have been a number of difficult days, but Alaina, as always, fought her way through with her usual determination and with the help of her many friends and family. She made it through the last day of school and then it was time to head to Children Hospital so that Dr Hecox could help figure out what was causing the increased seizure activity. Its been a long four days of tests, IV's and changes in medication that have made her very sleepy at times. Finally, this afternoon Dr Hecox said that she could go home. We are not sure who was happier that she was home, Bella or Alaina - they do love each other so very much. Please keep Alaina, Alexis and her parents in your thoughts and prayers as they continue to take it one day at a time in dealing with the effects of GLUT1.

Posted on June 11, 2018

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Posted on June 11, 2018

The Shelsta family were back in New York middle of May for the next round of testing and data collection. They had a short time to visit the Empire State Building and take in some amazing views of New York. Then it was off to the hospital to meet with Dr De Vivo and his team. Alaina was really excited to give Hugs4Alaina T-Shirts to Dr De Vivo and Dr Cornett. She explained to them that in the middle of her hand print on the back of the shirt is a heart. They were very impressed with the shirts but also with the story of the extraordinary team of people that are behind Alaina and her family and give them constant support and encouragement. The day was very busy and tiring but the family left knowing that Alaina is now on the oil for the next stage of the trial. Paul and Chris are so very grateful for the amazing team in New York. They not only do a fantastic job with Alaina, but go the extra mile to make Alexis part of the process and to ensure that the whole family feels informed and supported. They were glad to be home in time for the end of the school year and since returning their life has continued with the now familiar routine of monitoring, measuring and recording everything that happens with Alaina on a daily basis. Thank you to all of you for continuing to make this journey possible for Alaina and her family.


Posted on April 19, 2018

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Posted on April 19, 2018

Hard to believe that 6 weeks have gone by since our last update, time is certainly flying by. Alaina and her family did make their next scheduled trip to New York. They had planned to see some basketball at Madison Square Gardens and were so excited to learn that the tickets they had bought ended up being for the Marquette game. The bad snow storm prevented many Marquette fans, the cheerleaders and band from getting to the game, but the Shelstas were there to cheer them on. Alaina and Alexis had a great time seeing themselves on the Jumbotron. The next day was back to the routine of testing, lab work and then all the new steps and record keeping that will be needed to complete Phase 2 of the study. Then the Shelstas flew back to Wisconsin and back into the routine of school, measuring and recording the information for the New York study. Alaina and the Shelsta family have spent the last couple of days back at Childrens Hospital for the next round of interim monitoring and testing. Alaina really is such a trooper, having to constantly be in hospital and having different equipment put on her to gain the information the doctors need. Then of course there is the always troublesome IV. Alexis is, as always, there to cheer her up and help her through these tough days. She was also very happy to hear from Dr. Hecox that even though there was more evaluating that he would like to do, she could go home for her Birthday tomorrow. Happy Birthday Alaina ❤️😁

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