Florence is loving 5-year-old with the biggest fighting spirit! She was diagnosed with a terminal rare neurological disease as an infant and doctors gave her a one year prognosis. With her nine months of hospitalization and serious diagnosis, Florence needs full care and is 100% dependent on parents and caregivers. She has extremely low tone and inconsistent swallow which requires her to lay flat in her wheelchair, and a caregiver must be with her (even when traveling by car) to provide suction and prevent choking and aspiration.
But guess what? Florence the Fighter just celebrated her fifth birthday!
It hasn’t been easy, One of the biggest safety challenges is transportation. Currently, a family member or caregiver has to stand in the back of their van in order to provide suction for Florence. As a result, they forgo family/friend events and even some medical appointments because of the lack of ease and safety in transporting Florence.
Can you imagine? The family was told that Florence would never smile, be able to communicate, breath without a ventilator, have purposeful movements or have a good quality of life. Yet, here she is – smiling multiple times a day, crying to communicate that she is in pain or not liking something. She activates toys and muscle groups to move her body, breathes on her own, and has enjoyed several events and holidays that were never dreamed of. She’s living her best life.
All kids and families impacted by special needs want to be included and accepted into society just as much as typically developing children and families. In fact, a lot of these children have siblings that want this same thing for both their special sibling and themselves. Children like Florence, along with their siblings and families, miss out on so much because of the lack of needed equipment and financial challenges.
Variety KC’s partners recognized that the best way to help Florence and her family was by financially supporting the conversion of their current van to accommodate all of Florence‘s needs safely. No more missed medical appointments and no more missed opportunities for inclusion.
Help us to make sure all kids can Be Active, Be Social and Belong – donate today at varietykc.org/donate/