Wheelchair accessible vehicle for Braveheart Sky!

Click link: Skyleen Through The Years!

This is Skyleen. She is a fierce, determined, beautiful, bright, and brave 11-year-old girl who

is fighting a battle bigger than her since she was 9 months old. She faces challenges and obstacles that most people in their lifetime will never experience. She has a severe physical disability that has limited her from engaging with her peers and completing everyday life activities such as eating, bathing, walking, crawling, standing, and sitting up unsupported. She has no function of her lower body, she can't lift her arms or hands to gravity, and needs to frequently change positions from laying down to sitting down all day to prevent sores.

In 2014, at the age of 9 months old, Skyleen ended up in the ICU where she was diagnosed with Guillain-Barré syndrome (AMAN type) due to an adverse reaction from a vaccine. Skyleen received two rounds of IVIG in the hopes that this would slow down the attack and allow her to recover. Throughout the year following her diagnosis, she had many sessions of physical therapy and her first AFO braces to help with her foot drops. We thought she was on the road to recovery, but towards the end of 2015, her diagnosis took a turn for the worse. Skyleen started having trouble eating and breathing. In February 2016, she spent the next 2 months in the ICU. After numerous tests, Skyleen was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and chronic respiratory failure and failure to thrive. She needed a tracheostomy and was put on a ventilator 24/7, and a G-tube (feeding tube) was placed to help her get nutrition. Skyleen was discharged to rehab after spending 2 months in the ICU. While at her stay in the rehab, she did intensive physical and occupational therapy as well as made attempts to wean off the ventilator. She was discharged from rehab to home in May 2016 with the trach and ventilator still on 24/7. After a few months back at home, Skyleen's parents were able to wean her off the ventilator during the daytime, but not at night since the respiratory muscles are different when sleeping. She was at her weakest and would lose oxygen when weaning was attempted. Despite the win of weaning off the ventilator during the day, she had a setback in 2019 when she got sick with rhinovirus, and this caused her to go back on the ventilator 24/7. Throughout her journey, she has had many surgeries and setbacks. With so many therapy sessions, she gained some muscle tone and strength back but lost a lot of this progress from the surgeries. In 2020, she needed MAGEC growing rods placed due to her neuromuscular scoliosis in the setting of axonal Guillain-Barré Syndrome. In 2022, she had a knee growth plate to help correct the valgus, and she also had Achilles lengthening surgery to correct her foot drops. In 2023, she underwent a spinal fusion due to the MAGEC rods failing; these needed to be removed because the scoliosis was starting to progress again and push towards vital organs.

As a result of all the surgeries and therapy sessions, she has been able to tolerate sitting in her wheelchair for longer periods of time. She has great head control and is able to shrug and roll her shoulders in different directions. In addition, she has also gained some function in her fingers, and this has allowed her to be able to use an iPad for her school work, enjoy painting, and play video games.

Today, Skyleen still struggles with the physical challenges of her diagnosis, and it is becoming increasingly difficult as she grows to get her and the wheelchair everywhere we go in a standard SUV and in a regular Graco car seat that she will soon outgrow. Having a wheelchair-accessible car would be incredibly beneficial to Skyleen and her caregivers. It would significantly reduce transfers that can be painful and straining to both Skyleen and her caregivers. This change will improve Skyleen's quality of life, allowing her to have access to a wider range of locations, less time and effort getting in and out of the car, and enhance her overall comfort and safety when traveling for the long run. The cost of a wheelchair-accessible vehicle is 2x the cost of a regular car, so to help alleviate the financial burden on her parents, we are asking for donations to help make this goal attainable for Skyleen. Your support means the world to us, and we thank you for reading her story and appreciate your donations towards making a difference in her life.