Reagan

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Reagan is the happiest girl who always has a big smile on her face. She is such a bright light in this world and we are so lucky she is ours.

At her 9-month appointment she was not meeting milestones and her pediatrician diagnosed her with a global developmental delay and referred her to a number of specialists to begin our path towards a diagnosis. After multiple rounds of genetic testing we found two variants that were attributing to her delays, SCN2A and GRIN2A. The journey to a diagnosis is challenging but it gave us more direction and understanding to her needs. Reagan continues to be followed by neurology and has routine EEGs, ophthalmology, physical medicine & rehabilitation, genetics, and orthopedics.

Reagan is the hardest working girl! She has a great team of physical, occupational, and speech therapists that continue to help her progress. Today, Reagan is 5 years old and is crawling and pulling to stand consistently. She has a gait trainer and wheel chair and continues to walk well with assistance and we are hopeful she will gain the strength to walk independently with time. She is nonverbal but has a few consistent words – mama, dada, all done, and more. While she still has significant delays we are continually grateful to see her progress. Over the past 6 months she has made huge strides and we are hopeful she will walk and talk with time. Reagan leaves a
mark on those she meets, she is such a blessing. We appreciate the team and families of CureGRIN.

Through the years they have been a valuable resource for us to connect with other families, educate ourselves, and raise awareness for kids Reagan.

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