Gina's story
Montāžas Teksta
- "Just tell me what I need to do"
- "You have a very sick child; she has low-set ears, upturned nostrils, droopy eyes, and microcephaly"
- This moment really had an impact on me because it showed the love and determination Niki Mirabella had for her daughter. Despite being overwhelmed with all this information about her daughter just after giving birth and discovering her daughter was diagnosed with SLOS, the mother had incredible strength to do what she could to make sure Gina would return home to her family. Her mother did tons of research on SLOS and on ways she can best support Gina. As a teacher I would love for parents to share information through QA conversations to not only gain insight myself but so that the parent and I can establish a supportive partnership.
- With research, Niki Mirabella has traveled with her family throughout to find resources and support for Gina's SLOS. She had a permanent feeding tube replaced, received PT, OT, and special education. She was placed in specialized programs in schools, received assistive technology and had home therapy as well. This was really impactful because Gina was able to obtain early intervention that would impact her future. She received resources and support for academic and social development.
- As a teacher, I would help parents share their voice by having them share photos and videos just like how Professor Mirabella was able to document and share the life of Gina. Presenting pictures and videos can show records of the child's growth!
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