The Latest...http://curegm1.org/dec-2016-cure-gm1-update/ - Check out this end of the year post on the CureGM1.org website by President Christine Waggoner
Here's an image of how much has been raised so far towards our goal. It's amazing. You can always check http://curegm1.org/ and look at the bottom of the website to see this fundraising thermometer and it's progress.
Holiday Charity Concert
We had our GM1 Holiday Benefit Concert on December 10th. The Concert was a success and we were grateful for the support, it was a lot of fun! Here's a summary video, with bits and pieces from the night!
Here are the links to the other songs Marilee Kay and Company did:
Children who passed away from GM1 in 2016
We want to honor these sweet angels and their families. I know they are greatly missed. There are likely many more children that have passed away from GM1 that we don't know about.
Rayan Louchahi 1/13/2015 - 4/23/2016
Jaxson Reish 7/28/2014 - 6/16/2016
Pablo 1/2014 - 7/2016
Maite Ugarte 5/1/2014 - 11/2/2016
Porter Heatherly 9/14/2012 - 11/10/2016
Kierra 9/1/2015 - 12/28/2016
Update on Evan
Evan has been doing well, he's had a few colds and fevers over the past few months, but overall is healthy. He is still moving around well, falling a little more often than he used to and is even worse when he is tired, but most of the time is still very active. He is a lot of fun and loves to laugh at everything!!
Update on Eli
Eli is such a sweet, cuddly boy lately, but he has been sick a lot these past few months.
- In October his finger got infected and was swollen. He was put on antibiotics. (We think it was from him digging in the sand at a local lake.- In November he got sick with upper respiratory stuff, it hit him pretty hard the cough, congestion, fever. He had to miss more than a week of school and then was put on antibiotics again because he was getting a sinus infection.
- In December he got sick again with more cold, congestion and fever. One night his fever got up to 104 degrees, but we quickly got it to go down and he had to miss another week of school.
- Just a few days ago, he woke up with the whole side of his face puffy and swollen and had another fever, I took him into the Doctor immediately and she said she thinks its an infection of his salivary glands. He had to continue missing more school and was put on antibiotics. He finally seems to be feeling better.
Update on Laya
Laya worked hard to set the table for our Thanksgiving dinner. She takes great pride in creating, crafting and designing things :)