BENEFITING: AINSLEYSANGELS OF AMERICA
ORGANIZER: AINSLEYSANGELS OF AMERICA
AINSLEYSANGELS OF AMERICA wrote -
Ainsley's Angels of America is super excited to be spreading awareness and smiles through activism and education! Please take a moment to learn about Evan's story, as shared by his Dad, Jason:
On January 13, 2015, Evan was laughing so hard that he aspirated, falling unconscious; resulting in 90 minutes of CPR and an anoxic brain injury. Evan has damage to the basal ganglia and occipital lobes. He spent two and a half weeks in the PICU at INOVA Fairfax Hospital, during which the goal was to heal his lungs. By the end of the first 24 hours of his stay, he wasn't doing well - not well enough to survive and not well enough for the pulmonologist to determine what was causing his lungs to fail. Thankfully, the medical team decided to go ahead and do a bronchoscopy to see what was happening… the ENT extracted raw carrots from his lungs. Evan had eaten carrot sticks with dinner - approximately two hours before aspirating. Evan was put in a medically induced coma for several days and his body was cooled to preserve whatever brain function remained. After he was warmed to normal body temperature, an MRI was completed to assess the damage. When Evan's lungs were completely healed, he received a gastronomy tube and two days later we left the PICU to go to Kennedy Krieger Institute. Evan was in-patient there for six weeks and received two-three sessions daily of OT, PT, Speech and Recreational Therapies. Evan was discharged for "making minimal progress" and deemed in a "minimally conscious state." He was much calmer and content at home and started therapies a week later. Prior to this injury, Evan was a typically developing, very active toddler.
Anyone who meets Evan and spends just a few minutes with him can easily tell that he is happy, smart, perceptive, sensitive, stubborn and overall, truly "gets it." His cognition and personality are two abilities that he did not lose with his injury. He is very aware of his environment. Evan responds and reacts to his surroundings with facial expressions and vocalizations. His reactions to new situations are appropriate. Evan enjoys socializing with other children and is responsive to their words and actions. At times, Evan will vocalize certain words. Although inconsistent, when Evan does say these words, it is clear and appropriate.
Evan enjoys being included in all daily activities - no matter what or where. He loves going places - be it the grocery store, a park, restaurant, movies, museums, etc. Evan very much enjoys learning and experiencing new things. In addition to attending school full time and therapy after school each day, Evan enjoys participating in Cub Scouts, baseball, and Sunday School at our synagogue. Recently, Evan, along with his mom, has started learning to play the violin. This is a hand-over-hand joint effort that encourages his love for the symphony and use of his arms.
Evan LOVES School. He is in a Multiple Disabilities class and spends time in a second grade (general education) class with his peers. His favorite subjects are reading and music. Evan receives OT, PT, Speech, Feeding and Hippotherapy outside of school. He also participates in an adaptive aquatics class on the weekends. On a daily basis, Evan uses the following equipment (besides his wheelchair): prone stander, activity chair, gait trainer, sleep-safe bed, chill out chair, bean bag, wheelchair-accessible van and a communication device. He also has gym mats to lay on for stretching, rolling, tummy time, etc. Evan wears Dynamic AFOs daily to help stretch and support his legs. He also wears a DMO (Dynamic Movement Orthotic) suit daily to help with propioception and provide compression to help Evan engage his muscles for movement. Evan’s home has been modified to help him access his environment. This includes a ramp to get into the house, a curbless shower, and widened doorways (the last two are still under construction). He is transported in a wheelchair accessible minivan.
Evan is seen on a regular basis by many physicians/specialists including: Pediatrician, Neurologist, Gastroenterologist, G-Tube Nurse Practitioner, Neuro-Opthalmologist, Ear Nose & Throat, Physical Medicine & Rehabilitation, Orthopedic Surgeon. In April 2018, Evan had surgery to correct bilateral hip dysplasia (an effect of increased tone). Let's work together to ensure Evan can roll in comfort on a family bike ride!
Lastly, all contributions to are TAX DEDUCTIBLE under section 170 of the IRS Code, as Ainsley’s Angels is qualified to receive tax-deductible bequests, devises, transfers or gifts under section 2055, 2106 or 2522 of the Code. Our tax ID is EIN 45-3576353 and our IRS tax exemption ID (DLN) is 17053067330003. Of note, all donations through this page will receive a Donation Receipt from Crowdrise for upon donating and all goal overages will aid Ainsley’s Angels in mission execution!