- C
We are launching our fundraiser, after much prayerful consideration, in order to purchase an accessible van for Bella and our family.
Bella's Story
As many know, eight and half years ago our sweet Bella entered our world and completed our family of six. After a relatively normal start to life, Bella started having frequent seizures right around her first birthday. Over the next year she had hundreds (or more) of seizures and we began to work with specialists to find a why. As the seizures increased Bella lost all the milestones she had originally hit such as sitting up, eating a cracker, vocalizing, playing with toys, etc. Her world became full of doctor's visits, tests, therapies, and medicine trials to find treatments that might help. Eventually Bella was diagnosed with Dravet Syndrome--a rare and aggressive form of Epilepsy that does not respond to traditional epilepsy treatments. (You can read more about this disease and stories of other Dravet Warriors like Bella here: https://www.dravetfoundation.org ) Her seizures still continue regularly, but with less frequency due to a careful balance of treatments.
Our Why
Throughout Bella's journey her love and sweetness have continued to fill our world with joy. Her milestones have just been different and full of "not yets". She is now on a feeding tube, has a wheelchair, and is learning to communicate with us in non-traditional, non-verbal ways. She loves music, being outdoors, and hanging out with her siblings. She is an angel athlete with Ainsley's Angels, takes part in music and horse therapy, and is a part (in her own way) of everything our family does. It is becoming harder to get Bella and her wheelchair in and out of our vehicle. Doing things as a family can also sometimes mean taking two vehicles in order to have enough seats to accommodate our family (plus any of our "honorary Wrights" who are often with us) along with wheelchair, special needs stroller, and other gear. As Bella gets older (and bigger) we often find ourselves providing more of her care to her in our van while we are out and about as the many public places are not set up with spaces to care for an older child (or adult) with various disabilities and needs.
Our Need
We are now at a point where we need to purchase a wheelchair accessible van to support Bella's needs. We began this process several months ago by researching and talking to various organizations and other families who have traveled this road. We are now working with a great company in Indy and are ready to move forward. The next hurdle is that simply converting our current mini-van is not an option. This is mainly due to the number of seats we need to travel as a family and the space needed for Bella's care and gear. The conversion itself would take up most of the space we need for seating and cargo space. In order to accommodate Bella, her siblings, her wheelchair, and other gear, we need a full size van. We have found a great, fairly-new but used, van to purchase that meets all the requirements to be converted for accessibility. The van itself is around $27,000 and the conversion package is around $25,000. Our total cost will be around $52,000. Bella's support waiver will help cover around $7,000 of the conversion, so we are hoping to raise funds to put towards the rest of the cost. As we have learned through this process, financing an accessible van does not work the same as financing a regular vehicle. A large amount (or ideally all) of the cost must be paid up front in order to begin the conversion work. The conversion itself can take up to a few months to complete. Our goal is to secure funding, purchase the van, order the conversion, and possibly be ready to roll by summertime.
If you are able to support Bella at this time, we are truly grateful. If not, we understand and ask that you send prayers her way and that you might share this anyone you know who might be able to help. Thank you to everyone for your support. It truly means the world to us!
Bella's Story
As many know, eight and half years ago our sweet Bella entered our world and completed our family of six. After a relatively normal start to life, Bella started having frequent seizures right around her first birthday. Over the next year she had hundreds (or more) of seizures and we began to work with specialists to find a why. As the seizures increased Bella lost all the milestones she had originally hit such as sitting up, eating a cracker, vocalizing, playing with toys, etc. Her world became full of doctor's visits, tests, therapies, and medicine trials to find treatments that might help. Eventually Bella was diagnosed with Dravet Syndrome--a rare and aggressive form of Epilepsy that does not respond to traditional epilepsy treatments. (You can read more about this disease and stories of other Dravet Warriors like Bella here: https://www.dravetfoundation.org ) Her seizures still continue regularly, but with less frequency due to a careful balance of treatments.
Our Why
Throughout Bella's journey her love and sweetness have continued to fill our world with joy. Her milestones have just been different and full of "not yets". She is now on a feeding tube, has a wheelchair, and is learning to communicate with us in non-traditional, non-verbal ways. She loves music, being outdoors, and hanging out with her siblings. She is an angel athlete with Ainsley's Angels, takes part in music and horse therapy, and is a part (in her own way) of everything our family does. It is becoming harder to get Bella and her wheelchair in and out of our vehicle. Doing things as a family can also sometimes mean taking two vehicles in order to have enough seats to accommodate our family (plus any of our "honorary Wrights" who are often with us) along with wheelchair, special needs stroller, and other gear. As Bella gets older (and bigger) we often find ourselves providing more of her care to her in our van while we are out and about as the many public places are not set up with spaces to care for an older child (or adult) with various disabilities and needs.
Our Need
We are now at a point where we need to purchase a wheelchair accessible van to support Bella's needs. We began this process several months ago by researching and talking to various organizations and other families who have traveled this road. We are now working with a great company in Indy and are ready to move forward. The next hurdle is that simply converting our current mini-van is not an option. This is mainly due to the number of seats we need to travel as a family and the space needed for Bella's care and gear. The conversion itself would take up most of the space we need for seating and cargo space. In order to accommodate Bella, her siblings, her wheelchair, and other gear, we need a full size van. We have found a great, fairly-new but used, van to purchase that meets all the requirements to be converted for accessibility. The van itself is around $27,000 and the conversion package is around $25,000. Our total cost will be around $52,000. Bella's support waiver will help cover around $7,000 of the conversion, so we are hoping to raise funds to put towards the rest of the cost. As we have learned through this process, financing an accessible van does not work the same as financing a regular vehicle. A large amount (or ideally all) of the cost must be paid up front in order to begin the conversion work. The conversion itself can take up to a few months to complete. Our goal is to secure funding, purchase the van, order the conversion, and possibly be ready to roll by summertime.
If you are able to support Bella at this time, we are truly grateful. If not, we understand and ask that you send prayers her way and that you might share this anyone you know who might be able to help. Thank you to everyone for your support. It truly means the world to us!