Firefly’s Amazing Products

Have you heard about Firefly products? They are truly amazing! We have been blessed to be able to test out the Playpak, Splashy, and Scooot! Talynn truly loves ALL of them! The Splashy is one of my favorites! Splashy is a portable bath seat for kids with disabilities. It allows Talynn to be in the water … Continue reading Firefly’s Amazing Products

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I AM. WE ARE. #BOSAWARE

I cannot begin to tell you how impressed I was to see all that were involved in the BOS Awareness Day on April 6th. So many people from around the world were #BOSAWARE! Bohring-Opitz Syndrome is growing. The number of patients has doubled in size since Talynn was diagnosed in 2015. It is increasing every … Continue reading I AM. WE ARE. #BOSAWARE

Ultra-Rare Syndrome Celebrates It’s Day in the Spotlight

Orlando, Florida (April 3, 2017) This year marks the third annual Bohring-Opitz Syndrome (BOS) Awareness Day. On April 6th, people from around the world will shine the spotlight on this rare disorder by wearing denim and gold, along with other awareness events. BOS is an ultra-rare genetic syndrome with less than 60 documented cases in medical literature as of 2015. This number is now estimated to be closer to 85 among parent advocacy groups, as new diagnoses are being made through more advanced and available genetic testing. It wasn’t until 2011 that researchers were able to identify BOS was a result of a mutation on the ASXL1 gene.

Talynn’s New Car

For Talynn's third birthday, I wanted her to have something that most "typical" children have. Two of my friends, Sarah Halstead and Carrie Hunsucker, had just purchased/received an adapted car for their children. I immediately knew I wanted Talynn to have one. I started researching all the different types. I needed something with a higher back and remote control. Well I found it !

The Importance of Organization for a Child with a Rare Disease

Having a child with a rare disease is a loving, caring, busy, never ending, supporting, advocating life. For my child, we have a primary care doctor, twelve specialists, four therapists, three nurses, two case managers, and the list continues. For most, managing this can be very difficult which is why organization is extremely important. Here are some of the ways I have learned to manage Talynn's care.

Services being cut for medically fragile children!

Talynn has been denied skilled nursing because Talynn's ADL needs and GI tube feedings can be delegated to a PNA (CNA). This means that Division of Medical Assistance (DMA) believes Talynn can be cared for by someone who cannot give medications nor administer or adjust oxygen. Respiratory is the leading cause of death for children living with Bohring-Opitz Syndrome.