Evelina is almost two! For those of you who aren't familiar with our story, Evelina has a rare genetic condition called GA-1. GA-1 causes a deficiency of a specific enzyme that helps process the by-products of lysine metabolism. The treatment for GA-1 is a low-protein diet, a medical formula, some medications, and protection from illness. For most children with GA-1, this is effective, and 90-95% never have any lasting repercussions. However, 5-10% have a metabolic stroke that leads to physical disabilities. Unfortunately, Evie was one of those 10%, despite all of the isolation and careful measuring of her food we do. While she has had a stroke, it is what they call insidious (meaning the medical team thinks it probably happened prenatal or soon after birth). This type of injury with GA-1 is far more hopeful than the classic injuries that leave children completely unable to eat, speak, or move. We have so much hope that Evie will be able to gain more skills and have been putting in the work to help her do so. Evie started with early intervention when she was very young and now has 5 different types of therapies 8 times a week and has done multiple sessions of intensive physical therapy.

We have seen encouraging but slow progress with these therapies, including very recently seeing her sit independently for 10-15 seconds at a time when placed in a sitting position! We still have very large milestones to reach, including weight bearing on her arms, sitting, crawling, pulling to stand, standing, walking, and beyond.

Evie is an incredibly hard worker and has more motivation and determination than any of her many therapists have seen in a child of her age. She has no cognitive disability and is very curious about her world. We of course, believe she deserves the world and have been doing our best to give it to her.

Brandon and I have been so blessed by how the Lord has provided financially for all of our needs and so many of our wants and the extras in life, including multiple intensive sessions at Now I Can, a motorized mobility device for Evie, a monthly cleaning service to aid in the craziness of life, and a few getaways for Brandon and I this year for our anaversery and after mutliple miscarraiges. We have received surprise gifts, bonuses we weren't anticipating, and have been blessed by our consistent and kind employers.

So with all of these financial blessings, why start a GoFundMe? We have decided that it is in Evie's best interest to switch from attending Schreiber (which is paid by Medicaid) for physical therapy to having her treated regularly at Now I Can (which is mostly out of pocket). Now I Can primarily does intensive sessions that provide treatment 1hr 45min - 4 hr/ day for 3 weeks straight. Evie has completed multiple of these intensives and has seen progress each time. The Now I Can team expects more from her and can accomplish more with different techniques and a longer appointment time than is possible in a 45min appointment provided by Medicaid. We hope to have her seen every other week for 1 hour and 45 minutes. We also hope to have her complete two intensive sessions (3 weeks each) per year to give her the best chance of progress.

In the past, our insurance has covered a good portion of our time at Now I Can. However, our insurance changed last year, and there is now a set number of outpatient appointments that the insurance will pay for. Since we are also receiving multiple outpatient services for her at Schreiber, and they bill private insurance as primary until the benefits are exhausted, we will run out of those benefits early in the plan year. The therapies we hope to provide, as well as the costs of being seen at the clinic, minus what is covered by insurance, in my very rough estimation, will likely cost us around $12,000 out of pocket in the next year. While we know that the Lord will provide this, we also know that others have asked how they could bless us, and we haven't had a specific need before now. This will likely be an ongoing yearly expense, so this birthday fundraiser may become a yearly tradition and evidence of the Lord's provision in our lives.

We want to make it clear that this is in no way a dire need. We have been well cared for. It is instead a way we have decided to trust the Lord and move in humility even when it is uncomfortable.

Thank you so much to all of you who have been praying for us, reaching out during our time of isolation, and letting us know that we are loved. Your care means more than you know!