STAR child Everly wearing a white hat.


This is the English version, you find the original version below

A note from the Martin - Grooms family

We are the Martin-Grooms family, our daughter Everly was diagnosed with Salla disease at 13 months. Shortly before her diagnoses we became pregnant with her sister Lena. Lena does not carry the salla gene, we are very thankful that Everly has a sister to support her along this journey. 

We know our road to diagnoses was much easier than others as we share the same Geneticist as Branson, who was diagnoses at 17, a year before Everly. After noticing her delay in milestones at 7 months we started therapy and had an MRI at 12 months, showing delayed mylenation. Seeing similar symptoms as Branson our doctors recommended a test for Sialic acid levels and we got our diagnoses of Salla disease.  Our doctors didn't have much to tell us as they don't know much about this rare condition. As her parents we were left feeling very alone, until we connected with Branson's mom and The Foglios from New York and now we have our facebook support group. 

Everly has always had the happiest personality despite her delays. She lights up the room with her bright blue eyes and big smile. She communicates with us by pointing or yelling and is working on pulling up to sit and standing on her own. Everly attends speech, occupational, physical and in home therapy. We have taken a break from hippo therapy but plan to start again in the summer. Everly enjoys horses, Minnie Mouse cartoons, playing ball, coloring and hugging her sister. She is a very busy girl and works very hard to meet her goals. 

We are most thankful that we are not alone in this rare journey. The Foglios are a blessing to all of us and so are you, just by reading our storys and learning about Salla disease you are helping support the STAR foundation. Every donation made helps find a cure for Everly to live the life she deserves.

Thank you all! 

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