Skylar’s mother gave birth to twins prematurely at 25 weeks. One of her daughters , Rylee, passed away from complications of chronic lung disease at 2 months of age. Her sister, Skylar, survived after 104 days in the NICU and 2 subsequent hospitalizations. Skylar is now 3 1/2 years old and is medically involved. She has had 6 hospitalizations and 9 different surgeries/procedures. Skylar is deaf and has received a cochlear palsy, chronic lung disease, failure to thrive, developmental delays, and pervasive developmental delay. She is currently on 12 different medications and sees 12 different specialists. Also, she receives intensive therapies. Some of her therapies are received at a special Early Intervention Pre School that deals with special needs children. Other therapies are received out of town at Good Shephard Rehab Hospital in Bethleham, PA. Lastly, Skylar has many different types of assistive devices to help her including a Kid Walk gait trainer, a Lite Gait trainer, a Cuddlebug seating system, a Manatee bath seat, a Flamingo potty seat, a Traveler Plus car seat, a SPIO(Stabilizing Pressure Input Orthosis), and leg orthotics.
Due to the extensive stay in the NICU, as well as the delicate state in which Skylar came home, I needed to take over a year off from my job as a teacher. The money I lost in pay, aliong with the amount of money I paid for COBRA, and the expense of Rylee’s burial left me in financial distress. Additionally, it is very expensive to travel back and forth to Bethleham for Skylar’s therapies. I am currently back to work, as I can’t afford to stay home. Skylar is cared for by a Bayada nurse in my absence, which is luckily funded by my medical insurance at this time. My husband is currently laid-off and is collecting minimal unemployment. My salary and my husband’s unemployment have been keeping us somewhat afloat, however we are still swimming in debt and have been carrying expenses from the last 3 ½ years.
$625.68 was paid to bring Skylar’s pharmacy bill to a zero balance.