Love some 1 with Glut 1

by Charlene DeSot

Supporting: Love Some1 with Glut1 2020 for Glut1 Deficiency Foundation


Campaign has ended.


Hailey’s life has been such a great testament of God’s amazing love and grace. God has been by our side every step of the way. It was a ruff start to her life but God never left our side. Glut-1 DS is not a condition that can be faced without God. There is so many ups and downs with this rare medical condition you never know when something else will happen. You need faith in God to get you through the bad times and hold on to the promise that He will never leave nor forsake you. God never gives us more than we can handle, so keep strong in the difficult times because it will pass. 

In Hailey is 3 years old. we have seen so many miracles and I know we will see so many more. When Hailey was diagnosed at 8 weeks old it was very difficult to swollen everything they told us about Glut-1. Haileys future became very scary to me and I wasn’t sure how or if I could do this. “Do not boast about tomorrow, For you do not know what a day may bring forth.” Proverbs‬ ‭27:1‬ ‭ But God makes a way where there is no way. He has strengthened me when I needed it the most. He has given me the peace and patience when I needed it. God has and always given us what we need when we needed it. 

Hailey has had all kinds of seizures, movement disorder, low muscle town, walking difficulty, hemiplegia, hearing lost, vision problems and now speech problems but God alway heals her little body. It comes and go in waves. 

On good times Hailey is just like any normal 3 year old with almost no signs of Glut-1 she is such a happy girl and always steels peoples hearts when they meet her. She is so smart and loves school. She loves God with all her heart and is always singing and being silly. She is our little angel and a wonderful blessing from God. 

She is stronger than anyone I know. 

I don’t know what the future will bring but one thing I do know is that God will be there every step of the way. To guide us and lead us and give us the wisdom and knowledge we need to be the best parents we can for 

The Love Some1 with Glut1 annual campaign is the signature awareness and fundraising event for the Glut1 Deficiency Foundation, running from February 14-29, Valentine's Day through Rare Disease Day. It is an important opportunity to educate others and raise much-needed funds to help better serve the needs of our patient community through our mission programs for increased awareness, improved education, advocacy for patients and families, and support and funding for research.

Thank you for helping us reach our goal and supporting us as we continue our work to bring help and hope to everyone, everywhere, who is affected by Glut1.  You make our mission possible.

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