- Hello! Our daughter, Stephanie Carole Holland, suffered several lower brainstem strokes in April 2023. As a result, she has the diagnosis of incomplete Locked in Syndrome (LIS). A rare, very debilitating condition. Stephanie is non-verbal, and communicates using a Tobii Dynavox eye gaze tablet. She is on a feeding tube, and is considered a quadriplegic.
Stephanie is able to move her head, neck, shoulders, and is regaining some core movement. There have been other light movements in her arms & legs.
We have been fortunate that Stephanie‘s insurance has paid for the majority of her medical bills, therapy & equipment. But there have also been many items that we have purchased out of pocket over the last year, plus extra therapy and caregiving. We have joined several Facebook groups with LIS survivors and caregivers. No two stories are the same, and there is no way of knowing Steph’s prognosis.
The number one thing that LIS survivors respond to is tons of therapy. The key is a lot of repetition, every day, over and over to create new neural pathways around the damage that has been done in the lower brainstem. This is called neuroplasticity. It can happen faster for some people & slower for others. Steph is starting to show more movements recently in her arms, core, & quads.
There is a machine called a Quadriciser that has excellent reviews & results for neuro patients with similar conditions as Steph. Quadriciser is the only patented device in North America that can move all four limbs simultaneously and is helpful to individuals who cannot move, to regain movement. This machine is not covered by insurance.
We are hoping to raise enough money to help us buy this machine in the next few months. Stephanie’s 33rd birthday is on April 25th. We would like to show her this campaign so that she can get excited about having this therapy machine one day soon!Stephanie has two teenage daughters, Taylor (15) & Maddie (14), who both live with us as well. They long for a day when they are able to hear their mother’s voice again, have her be able to hug them, and have her sing and dance with them, like they used to do together.Only God knows what Stephanie‘s journey will be. But we are hopeful, and trying to keep our faith and trust that she will have a better quality of life soon; that she will be off of a feeding tube, be able to eat, be able to speak, and be able to move her body, including being able to walk again.
We are not people that ask for help. This has been the hardest year of our lives, watching our daughter go through this heart-wrenching condition and being her full-time caregivers. She has made gains, but has also been hospitalized three times for pneumonia.
Stephanie is a fighter and a survivor, and she has a very positive outlook! She will tell you that she will heal & get through this and that we must be patient. She says that God is listening to our prayers and that He doesn’t want her to suffer.
If you choose to donate, your donation will be tax deductible. Any amount is a blessing. It will be greatly appreciated beyond anything you could possibly know!
We realize that not everybody has the funds to be able to donate and we completely understand. If you are able to share this on social media or with your church, we would greatly appreciate that as well.
God bless you all, and please keep Stephanie and her daughters in your prayers.
Thank you so much! 🙏Rob & Sarah Binder
