Our beloved Sofia Mar turned ten last year and it has been a remarkable year. She is now in third grade working extremely hard to achieve her goals, improving her grades and making us very proud of her accomplishments.
Sofia continues to be very active girl!! She’s still attending Speech and OT and for about 4 months, she has been enjoying equine therapy. This has been a wonderful experience that helps with her self confidence. In addition, for the first time, Sofia participated in a special olympics swim meet where she earned a gold medal for 25 meters backstroke in her age group!
Furthermore, Sofia continues to hone her dancing skills. Last December she participated for the first time in a production of the Nutcracker with her dance studio, which she continues to relish until today. She glows in the dance floor!!
We continue to be amazed of how far our princess has come since she was first diagnosed with Glut-1Deficiency Syndrome (Glut-1 DS) 7 years ago. Before her diagnosis, she could only speak a few words, her balance and coordination were poor and she struggled with fine and gross motor skills. It is indescribable to see how her treatment with the ketogenic diet along with therapies, care and love have allowed her to blossom in to the wonderful girl she is now.
Glut-1 DS is a rare genetic disorder and it remains extremely difficult to obtain funding for research. The Glut-1 Deficiency foundation runs an annual campaign to raise funds and awareness of this rare condition while aiming to provide assistance for research that ultimately will find a cure.
Please join our family in supporting this campaign!!!
Thank you for loving our Sofia Mar, our some1 with Glut1.
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.
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messages from the heart of our community
learn more about Glut1 Deficiency
our new video to help raise awareness and improve education
please visit our website for more information