Whew, we’ve been living an upside down kind of life since we saw you all last, and not just because of the pandemic…

You might recall we closed our store in January 2016, and the business as a whole in December 2016. It was a really hard decision. We adored working with our store team and the FRIENDS we had employed since 2007. They were the reason we did what we did and our daughter, Emma, was the namesake of the business.

In the Spring of 2016 we began to learn about what was perhaps the largest barrier Emma experienced in her life: CVI, cortical visual impairment. CVI is a brain-based visual impairment which impacts your ability to interpret the world around you. We knew Emma’s school aged years would end and we needed to focus all our efforts to help her to learn how to see. Spoiler alert: SHE DID!

Emma and I ended up moving away from our home to seek opportunities for her to learn. We lived apart from her Dad/my husband (if you were at shows near set-up/break down, you likely met him too!) until Covid hit and the world shut down. We might have been the happiest people to shelter at home after being away for nearly three years.

In between there, in 2019, Emma finally received a diagnosis, the cause of her complex needs: HNRNPH2, a very rare de novo (spontaneous) neurodevelopmental disorder. At 17 years old, we finally had a name, and more importantly, Emma had a newly found genetic family of siblings. That has been such a gift to us all. And, remarkably, this Fall (2024) three of girls with HNRNPH2 began an experimental therapeutic drug to treat their collective disorder. Our Pioneer Patients! Stayed tuned for news on that!

During Covid, when things began to slowly open, we learned Emma needed heavy duty surgeries to correct multi-level orthopedic concerns. They weren’t fully understood until she had a full gait analysis in October 2020. In February 2021, Emma underwent 12 procedures in an Olympic surgical event, enduring bilateral femoral de-rotations/osteotomies, a triple pelvis osteotomy, a tibial osteotomy, correction of both heels, 7 metatarsals and 4 muscle cuts. After months of hospital and Ronald McDonald House living, with intensive inpatient and outpatient therapies, we came home. Again. We were so happy to be home again!

After preserving through 9 months of rehab, working incredibly hard to regain muscle and skills, Emma’s left femur was nonunion, it didn’t heal, and the hardware holding her leg together snapped in half. Two aspects of her pelvic osteotomy didn’t heal either. With all of that skeletal imbalance, her pelvis spontaneously fractured in another spot.

It was a hard time. She endured a lot of pain as we worked to understand what was happening in her body. Osteoporosis, it turned out, was keeping her 19-year-old body from healing. Upon realizing that, she started daily injections of medication for her osteoporosis.

Her Endocrinologist recommended she wait a few months for the osteoporosis treatment to begin to impact her bone health. In March 2021. Emma had revision surgery to remove the broken hardware and replace it with larger and more hardware to stabilize her femur. Our incredibly strong girl lived with a broken leg for nearly six months. She still had that broken pelvis (3x), but her femur had to be addressed first.

While most went back to school in person after Covid, we continued with school at home. She made great gains in reading, number awareness, communication, orientation and mobility (she has a very smart power wheelchair now) and in general skills (who knew she would love cooking!). We were, and are, incredibly proud of her determination to learn. In June 2023, Emma received her cap and gown and concluded her educational career. That is just crazy. How does time go that quickly???

In October 2023, Emma underwent what we hope was her last orthopedic surgery, having a very large screw placed in her pelvis to bring the broken bones together. In January 2024, x-rays showed her left femur had finally healed! Praise God!!

With the length of time her pelvis was nonunion, there were no guarantees of healing. But that larger screw fixed the bones in place and so we prayed for the best, hoping the stability and an extension of the daily injections for bone health would have a positive impact. Her pelvis has showed slow and steady healing. Halleluiah! Her next x-rays aren’t until February 2025, but based on her increased mobility and speed with which she is walking, we remain hopeful that she will in fact experience full healing. We’ll keep you posted on that. 🙂

It has been a journey to get to her adult years, and for her body to grow strong. As Emma has shown that she is ready to get back to living a fuller life now that her body has stabilized and her days are more predictable, we are looking to give her an opportunity to experience some of what we built with Emma’s Friends 1.0.

The changes in our line of goods, as well as the packaging, reflect what we have learned in accommodating Emma’s visual and motor needs.

The labels are simple to provide visual access to Emma (complexity is tough for individuals with CVI), the color-coded labels and caps help her to identify the lip balms to label and pull/pack orders. The tubes are round so that she can take advantage of a switch adapted labeling machine. We are packaging lip balms in groups of three for ease of order fulfillment and shipping.

Emma’s Friends 1.0 was wonderful and exciting; it was also a lot of work and required a tremendous amount of time to run. [Did you know we made over 10 tons of soap just in 1 and 1.5 ounce bars for the Shawnee Inn & Golf Resort alone? That’s a lot of little soaps. ;)] Our lives and Emma’s needs are very different from that time. It was a wonderful, but untenable for us now.

We are only offering lip balms because that is what Emma can manage, and it fits in with our lives now. And because we have heard that they have been pretty irreplaceable. 😉

We are still working our way back to life before surgery and are grateful to be able to open Emma’s Friends 2.0 in this form. We hope you can appreciate the changes, why we have made them and find joy in the simple offering we have.

We feel fortunate to have this opportunity for Emma and are so thankful that you have come back to Emma’s Friends.

Lynn + Emma