Hello! My brother in law has set up a gofundme to get a mobility van for my niece. You can donate here.
Copy and pasted from the page:
Hello, my name is Andrew and we are looking to fund a Mobility Van for our sweet daughter Evelyn. She was born in Japan with a rare pathogenic mutation of the ASXL1 gene named Bohring-Opitz Syndrome. We almost lost her at birth and on the medical evacuation to Rady Children's Hospital, San Diego 48 hours later. Due to BOS, she has a myriad of symptoms but the ones that drive the need for a mobility van are low muscle tone and abnormal corpus callosum development in her brain. This causes cognitive and motor functional development to be slowed greatly. She is not mobile, has no head control and is ventilator, oxygen and feeding tube dependant. While she can still fit in her car seat she will outgrow the rear-facing seat by next year and will require head support for forward facing. Currently, her wheelchair capable of head control and is an approved mobility device to be used in an accessible van but insurance will not cover the cost. While some potential grants and charities can help, there will still be a heavy out-of-pocket expense. The price ranges from modifying our current van at >$21000 to buying a new van at >$60000. I have set the goal of this fundraiser to $60k for a new van with a fallback plan of purchasing a used one or having our current van modified, which has a 4-month turnaround. If we chose to have the current van modified, we will need another van in the interim to meet her appointments.
Head control aside, with a mobility van, we would be able to easily wheel her and her equipment straight into the van to make it much easier to get her out and about. Her Wonderfold Wagon we use to haul her in a special chair and her gear to and from the van. While it is just fantastic, she is quickly outgrowing that as well and soon will not fit in it. This is another reason for us seeking funding for a mobility van.
We humbly ask your assistance in purchasing a mobility fan for our sweet Evelyn.
Thanks for donating and/or sharing! 💝
amandla
areudirty
dailybridgerton
theartofmadeline
