Our little miracle, Davina Maria, needs our help.
After five years of being able to comfortably ride in a car seat, Davina, with God's blessings, has grown to a whopping 50+ lbs and her transportation needs have drastically changed.
Presently, Davina is housebound outside of traveling to school via a specially equipped bus (Yes! Davina started kindergarten!). For those who know Davina, and mother Ekiko's story, it's been a tense, yet rewarding, few years. 24 hour nursing needs (the majority facilitated by Ekiko personally), long and frequent hospitalizations, multiple surgeries, negative prognosis, a divorce and more. Throughout, we've witnessed the true beauty of a mother's love and dedication to her child while dealing with her own life traumas and economic woes. It has often been said that, "God knew the perfect union when he gave Davina to Ekiko."
Davina is diagnosed with a rare genetic disorder known as Aicardi Syndrome. Some quick facts about Aicardi characteristics are:
1. Disorder predominantly affects girls;
2. Aicardi causes a partial or complete absence of the corpus callosum, which is the part of the brain which sits between the right and left sides of the brain and allows the right side to communicate with the left;
3. Aicardi causes Infantile spasms and/or a form of epilepsy/seizures;
4. A very specific characteristic of Aicardi is the presence of Lesions or "lacunae" of the retina of the eye causing blindness;
5. Aicardi also causes other types of defects of the brain such as microcephaly, (small brain); enlarged ventricles; or porencephalic cysts (unhealthy brain tissue in the gap in the brain.
6. Prognosis for these children varies. Almost all experience developmental delays, with the majority facing moderate to severe mental retardation.
Davina also suffers from Cerebral Palsy, Scoliosis, Asthma and other Respiratory Disorders. Despite these tremendous physical ailments, as she physically grows, her presence and aura inspire those around her as she shows her great inner strength and tenacity; the spirit of a child. Although none-verbal, her cognitive abilities are ever present as she responds to familiar sounds, music and other activities. Davina is beating the odds, astounding the medical community and experiencing life just as her mother planned.
Now, they have reached another cross road and need help! This is where we come in. Davina needs transportation for doctor's appointments, therapies, classes and simply... life!!!
Months ago we began the process of researching options and have found a used handicap accessible conversion van that is perfect for Davina's needs. With a ramp/ lift already installed, Davina can be securely transported without ever leaving the comfort of her wheelchair. This is not just fro convenience but essential since she is medically fragile. The van provides room for all of her medical equipment, a nurse, and more. The cost of the van is in excess of $30k. Our Goal is to help purchase this van outright.
Will YOU Help???