In 2000, Gwenn joined our family from China. After she came home it was easy attributing her many physical and developmental delays to her time in the orphanage. Gwenn didn’t meet growth milestones, and she had trouble with words. Eventually diagnosed with many things, including diffuse static encephalopathy, failure to thrive, pediatric anorexia, sensory processing disorder and more – but Gwenn didn’t seem to fit into to fit into the typical molds for some of the issues she had been diagnosed with.
By her ninth birthday, a neuro-psych exam showed severely impaired short-term memory, making school and learning difficult. And, at only 42 pounds, Gwenn had huge feeding and weight issues. A feeding tube was placed, and she began to gain weight. But while Gwenn began growing, in other areas she was developing more behavioral and psychiatric problems, and her symptoms kept appearing worse. Finally, someone suggested a specialist who might be able to help, and in July 2011 we went to Atlanta and met with Dr. Fran Kendall, who gave Gwenn a diagnosis of mitochondrial disease. Gwenn has gut motility issues in addition to her feeding issues, which I learned is common to Mito kids. Speech issues, muscle tone loss, fatigue and a continued decline in her IQ are also a result of the disease.
This past year has been filled with both ups and downs, as most families with teens experience. It is difficult to balance Gwenn’s energy issues with allowing her to have a typical teenage life. Gwenn recently started 11h grade. She continues to use her wheelchair at school to save energy, which has been a successful strategy. She is able to participate at school in the Anime club, and has completed an application to the National Honor Society, proud of the 3.7 GPA she has maintained, albeit with highly modified coursework that is appropriate to her current cognitive level. Currently a senior in high school, Gwenn will move into a Transition program after school, and is also considering local schools that offer special needs College programs for young adults with intellectual and medical disabilities. She is excited about getting her first job, and taking classes in photography and drawing.
Gwenn enjoys typical teenage activities such as participating in her school Anime club, reading Manga and Anime, participating in her Rainbow Girls Assembly, and spending time with her family and friends. She is also participating in Team Impact! and is making new friends through the Northwest University Women’s Volleyball team. Go Eagles! She gets to sit on the bench with the team, go to games and events with them – and has loved the outreach and support those girls offer.
We are so very thankful for all of the support we have received since Gwenn’s diagnosis. The ability to receive and give support to the other families in the Guild has been so important. Gwenn continues to be the same amazing, vivacious and effervescent girl she was prior to the diagnosis. However, the impact of Mito on Gwenn and other children we meet through the Guild is significant – and highlights the importance of finding a cure for this disease now.