Neurodevelopmental delay, Neuromuscular Scoliosis and Epidermolysis bullosa Simplex without sphincter control. Her current diagnoses are listed as Cutis lax, dysmorphic syndrome under study and severe Kyphoscoliosis.
Suvi came into care at the age of 2 years old when she was found to be severely malnourished in her remote village where she had no access to medical care. It was determined that Suvi suffers from a rare condition known as Cutis Lax, which is a group of conditions that result in loose connective tissue including muscles, joints, skin and other organs. Children with this condition appear to be prematurely aged as Suvi does. To learn more, visit the National Organization for Rare Disorders informational page on Curtis Lax. She is not currently on any medications. She sees the several specialists, and it is known that Suvi will need surgeries in the future on her spine.
Suvi is a calm child who lives with a foster mother that has fostered children with disabilities for many years. She attends a special school and has made progress since starting there. While she does do her school work, it is not with much academic skill and her teacher believes she will not make cognitive progress in learning and memory. Suvi’s foster mother reports she is obedient, affectionate, more autonomous, knows where her belongings are and is concerned about her self-care. While she is autonomous in some ways, she is dependent in others. For example, she wears diapers as it is not expected she will ever be able to use the restroom on her own, and while her motor skills have improved to the point she can walk (with difficulty) and crawl, she uses a wheelchair for long trips. She can take off and put on her shoes and clothes with assistance, washing herself in the bath, as well as some other tasks. Suvi does not have verbal language, though her foster mother reports she says things such as “I love you” and “thank you” though she would not speak for an assessment. However, she is able to express her emotions and needs to those who care for her. She is said to have many friends at her school and interacts favorably with others.
Suvi is a girly girl who loves having flowers and other accessories in her hair. When her hair is combed, she smiles. She loves pink and purple clothing, and enjoys playing with her baby doll she has named Baby. She enjoys playing with Barbie dolls, paint, dance and sing, watch Bluey, eat ice cream, and listen to music. Suvi needs a two-parent family who can commit the time and attention she needs to help her develop to her optimal abilities and who can ensure she receives the ongoing medical care she requires.
