Families tell us that they keep at least one AudreySpirit shirt in their car just in case a trip to the hospital becomes necessary. This gives their child confidence and empowerment from having their very own, reliable choice for dignity and modesty – at any time.
Kids with chronic complex conditions often have health problems interrupt their plans and may have to stay in the hospital without any advance notice. Their unique medical dilemmas can make them feel alone since their diagnosis or treatment options do not nicely fit into a single known group (such as asthma or diabetes - Audrey had both plus many other diagnoses).
Like Audrey, others have invisible life-threatening diseases which may cause intermittent and permanent disabilities and/or rely on technology (implanted medical devices and durable medical equipment). Many may never receive a specific diagnosis or may receive one or more rare medical diagnoses. Too often however, they and their health providers are not aware that they do BELONG to a broad health group with a community of family support.
AudreySpirit aims to raise awareness of this special group of kids and young adults by spreading the word that they are not outliers, but are indeed part of a health population called children with medical complexity (CMC) - and that this population includes the entire family.
We also aim to inform families and providers that inclusion in this group does not require qualification for specific state or federal programs. While a fraction of these children do qualify for state and federally funded services and community supports, all families can benefit from education, the sense of belonging, and by joining personal and policy advocacy efforts. Just knowing my family was not alone in our journey was the most impactful support we had.
Learn how you can become involved in your State or Territory Special Health Care Needs Program (SHCN) and what their priorities are:
https://mchb.tvisdata.hrsa.gov/PopulationDomain/Detail/ChildrenwithSpecialHealthCareNeeds
Join mailing lists of both the national and your local family support center http://familyvoices.org/
My state's examples are:
The Kansas Special Health Care Needs (SHCN) Program
Join our mailing list!
Spread the word!
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