Help Milleigh’s Family Purchase An Accessible Van

As many already know Milleigh Blair suffered a near SIDS event at 3 months old. The lack of oxygen caused damage to her brain resulting in cerebral palsy. Milleigh’s pretty significantly affected. She requires full care, day and night. In addition to CP she was born with a heart defect and pancreas defect. She’s a medical mystery beyond her brain injury. With what we do know, many of her doctors believe she has something genetic, but nobody knows what. She’s had genetic testing a couple different times, and nothing comes back. Her heart defect was surgically repaired around 17 months of age. Her pancreas defect started causing a lot of problems shortly before her 6th birthday. We spent 4.5 years in and out of the hospital with pancreatitis. She became incredibly ill multiple times. It became apparent that we needed to do something to give her (and us) a better quality of life. She was referred to Nationwide Children’s Hospital in Columbus, Ohio last year. They deemed her a candidate of surgery to remove her pancreas, and due to how bad her pancreas was and that she had stopped growing and couldn’t gain any weight we needed to move forward pretty fast. Surgery was June 2023. With that came the removal of her spleen, gallbladder and appendix due to the complexity of pancreas removal and those connecting organs. The surgery was almost 16 hours and she spent the next two weeks intubated on and off, and required two additional emergency surgeries. She now requires frequent follow ups with her Ohio medical team. Milleigh went the last 4-5 years with pretty minimal growth due to how sick she was. Her bone age is that of a 7 year old (she’s 11.) We recently had to start her on growth hormones to allow her body and organs to be healthy and grow. It was also suggested we go back to blending her food. With these two changes, Milleigh is slowly starting to grow!

For years Ben and I have hesitated to fundraise to help purchase an accessible van. A combination of “I can do it myself” “I don’t want it” “I have other kids and we need the space” have definitely delayed it. Recently she received a new and bigger wheelchair to accommodate more growth and it weighs over 80 pounds and is wide. I struggle getting it in the van! It’s limiting our outings and honestly, it’s depressing. This life is already so hard and isolating, but I’ve began to feel like a prisoner in my own home. I don’t go anywhere besides therapy and doctor appointments with her anymore because it’s too hard on my body to keep lifting her and her wheelchair everyday. I’m constantly bruising my arms and a few months ago I hurt my upper back/neck and nerves to my right arm pretty badly. Full-time caregiving, advocating with hospital providers but also insurance, refilling prescriptions, doctor appointments, therapy appointments is very consuming. An accessible van would give us back the energy to use on other caregiving tasks, or maybe even taking care of ourselves. We’ve been too scared to make such a big purchase because Milleigh was so sick for so long and we thought we would lose her. This past year post pancreas removal she has been so healthy. Fighting a couple viruses at home over the winter, but she’s happy and thriving. With this and added growth hormones she’s going to finally grow and we desperately need an accessible van!

We struggle asking for help, but we’re at the point that we don’t have any other options. Accessible vans are very costly! Insurance doesn’t help at all! We’ve filled out so many grants and some want to see that you’re trying to fundraise on your own some. We’ve talked to an accessible van company and they said most van purchases will require 20% down. So here we are! The more we raise the better, as we need this van to last us several years for Milleigh.

Any amount helps! We’re so grateful for your support of our family! We’re looking forward to days out spending more time as a family, and being able to just roll Mills and her wheelchair right in and out of a van. The special needs world can already feel so isolating at times, and we’re typically a family that’s on the go, so this has been pretty hard for us. Thank you for making our lives a little easier and lifting a huge weight off our shoulders.

Love,

The Turner family