Ever wondered how parents navigate the unfamiliar terrain of rare conditions in their children? Laura Wood, a seasoned service manager for a Social Work Service, opens up about her personal journey of parenting a child with achondroplasia. From the shock of the diagnosis through an emergency scan to the challenges of accessing appropriate healthcare, Laura's story is a raw narrative of resilience and determination.
Touching on societal perceptions of disabilities, Laura and Adam unearth some uncomfortable truths about negative stereotypes and the urgent need for a paradigm shift. The discussion extends to her experience of establishing a strong support system that equipped her with vital resources and data to comprehend her daughter's condition better. This episode also takes you through the emotional highs and lows of raising a child with dwarfism and the crucial role of regular scans in monitoring growth.
The conversation focuses on the necessity of education and awareness in managing rare conditions along with the shortcomings of healthcare systems. Laura's inspiring initiative of setting up soft play events and other resources for parents and children dealing with similar conditions is another highlight. Laura underscores the importance of empathy and diversity in our society, and how these values ensure that we cater to the needs of everyone, especially those living with rare conditions. Stay tuned to hear about our plans to collaborate in October for furthering support for individuals living with rare conditions.
Follow us on Twitter
@UoWFEHW
@DIIverseHub
@VascoAdam