Very Accessible Vehicle for Violet

Violet is our 11 year old daughter. Our inquisitive girl excels in school and is currently in 5th grade where she is loved and adored by classmates and teachers. Her greatest love is learning. She has the best sense of humor and the quickest wit. She loves horseback riding, music and swimming. Although this sounds like a typical 11 year old, Violet is far from typical. The doctors explain that the genetic condition she was born with, Lissencephaly, was as random and unpredictable as a lightning strike. The world’s leading expert on Lissencephaly predicted the following prognosis: Violet would only develop physically, mentally and emotionally to a 5 month old level. She would never communicate, not even make eye contact. She would have no purposeful movement. She would have devastating seizures for as long as she lived. Violet has fought tooth and nail to surpass these expectations by leaps and bounds. She has stunned and left speechless the world’s best pediatric neurologists. She is our miracle and the reason you too should believe in miracles. This however does not mean Violet lives without struggles. She requires 24 total hour care. She is not able to complete any self care or tasks of daily living. She uses a wheelchair, a speech generating device to communicate, receives most of her nutrition through a gastrointestinal tube and is on multiple medications. In January, Violet had brain surgery to help with seizure control as she was having up to 30+ seizures/day. Improvement from Deep Brain Stimulation Implants takes time, but we’re already seeing great things! She is a fighter in every sense of the word. Unfortunately, our miracle needs another miracle. We are facing a really, really difficult truth. We are now at the point that we absolutely need a wheelchair accessible vehicle. Trying to get Violet in and out of our vehicle safely is becoming increasingly difficult. We’ve done our best to muscle through it. However, at some point very soon, it will no longer be doable. (If you watched the process of getting her out of her chair and into the car, you would have no doubt.) You see, Violet is transported to the car in her wheelchair. She is then transferred into the car by one of us actually lifting her up out of the chair and then maneuvering her into the car and car seat. A second person has to be in the car to help pull her into the seat. She is also growing like a weed, and so it also difficult to buckle her in the car seat as she is quickly outgrowing that as well. The whole process is difficult, but more so completely uncomfortable for Violet. I’m sure all of you are familiar with the size and dimensions of an 11 year old child, now imagine lifting, carrying and placing them safely into a carseat all while they are in no way assisting you. Then imagine buckling them into their carseat that they are just about grown out of. You must also remember, this cannot be a team effort. Adding another person to the lifting process adds an immense amount of increased risk of dropping violet due to the small space available to place her into the car. This process compared to her remaining in her wheelchair and just wheeling her right into a handicap accessible van would make a world of difference. We have been told by social workers at CHOP that most families with children as medically fragile as Violet are not able to afford an accessible vehicle due to one parent typically needing to be home providing and managing care in addition to the extra costs around that care. This was both reassuring and disconcerting. We were told that most families are “gifted” vehicles after calling dealerships over and over and literally begging. (Sigh) As her parents, we are willing to do anything to provide Violet with what she needs. As such, we’ve reached out to dealers but not yet had any success. One of the many lessons I have learned as Violet’s mom, is finding peace in accepting the gifts and grace shared by others. There is no denying that when I am able to share what I have or who I am, in a way that is a blessing to others, it almost always feels like I am in fact the one receiving the greater blessing. In that sense, who am I to stop others from sharing with us? If you are not familiar with the cost of wheelchair adapted vans/SUV’s, I would encourage you to do a simple google search. Even used, high mileage and late model adapted vehicles are extremely expensive. We are ready for an adapted suv or van that we can rely on for the long haul and that will safely get us to and from Children’s Hospital of Philadelphia, Boston Children’s Hospital and other therapies whenever it’s needed. I cannot afford to be afraid of how big this ask is because not asking means we have no safe way to continue taking Violet to doctors appointments and therapies, not to mention just taking her all the typical places families go! Violet simply needs this. She is the bravest and most miraculous child I’ve ever known. So, I am going to follow her lead and ask for those of you whom might wish to contribute to the purchase of an accessible vehicle, do so knowing you are contributing to part of another miracle.