SAFIRA-EU from European Union

Safira was born in June 2019 and has been diagnosed with fibrodysplasia ossificans progressive (FOP), confirmed by genetic analysis. This exceedingly rare and progressively debilitating disorder currently presents with a life span of about 40 years and people with this diagnosis typically use wheelchairs by age 30. Safira is under regular medical care for her condition although there is no cure at this time. She has also been diagnosed with Autism Spectrum Disorder. Safira currently lives in a devoted foster family. UPDATE SEPTEMBER 2022: Over the course of this year, Safira’s ability to move, particularly in her upper body, has continued to decline and she needs assistance with tasks such as rising from bed. Her balance and flexibility are deteriorating as well. In addition, Safira was diagnosed with Autism Spectrum Disorder which manifests in impaired communication and self-regulation skills as well as an overall delay in her development. Safira’s foster family continues to be emotionally warm and dedicated to her care although they are choosing to restrict her social interactions and community participation to keep her safe. Safira enjoys watching cartoons and listening to children’s songs. JULY 2022: At this time, Safira walks independently and is active although care is taken to avoid even light injuries. Mobility in Safira’s arms, hands, and shoulders is already limited, but she strives to complete activities such as doodling, swiping on electronics, and holding everyday objects. In 2022, Safira has become increasingly interested in interacting with loved ones, acquaintances, and strangers, looking for their attention. She smiles, seeks closeness, and initiates play. Safira babbles and uses single words. Due to the need for constant supervision and physical protection from injuries, Safira is fairly isolated from interactions with peers and community participation. She is in contact primarily with the members of her foster family who are giving her a lot of assistance, perhaps even with tasks she could learn to manage herself. A family interested in adopting Safira is encouraged to research her diagnosis and how it will affect her in the coming decades. She will need long-term resources and assistance to support her quality of life and to achieve her best potential.