Lilia Grace Jung is a joyful, determined two-year-old whose life has been marked by strength, perseverance, and grace from the very beginning. She is brave, full of joy, and deeply loved. We truly believe she is a miracle, fearfully and wonderfully made, and her life has already taught us more about faith, trust, and surrender than we ever expected.

During pregnancy, Lilia and her twin sister developed Twin-to-Twin Transfusion Syndrome and underwent life-saving surgery at just 19 weeks gestation. Shortly afterward, Lilia lost her sister Chloe. Lilia was born prematurely at 31 weeks following a traumatic delivery, and spent 22 days in the NICU. 

As Lilia grew, it became clear she was slower to reach certain milestones. At 18 months old, she was diagnosed with diplegic hypotonic cerebral palsy, meaning low muscle tone primarily affecting her legs. This diagnosis was difficult to receive, but it also gave us clarity and direction. It helped us better understand how her brain and body communicate, and how to support her well - trusting God with what we cannot control while faithfully stewarding what we can.

Since her diagnosis, Lilia has worked incredibly hard in therapy. She has already completed multiple physical therapy intensives, each one leading to meaningful progress. After her first intensive, she began crawling. After her second, she started cruising along furniture and is now walking with a walker. 

At Lilia’s young age, her brain has the miraculous ability to learn and adapt - forming new pathways through movement, repetition, and challenge. These early years are a very narrow and important window. The work we put in now matters deeply, because the therapies she receives today can shape her strength, mobility, and independence for the rest of her life. She will inevitably need therapy for the rest of her life, but these early years are the most crucial.

As we walk this road with Lilia, we’re learning to hold both hope and reality at the same time. Lilia cannot yet stand or walk on her own. She also experiences increased tightness through her thighs which places her at risk for challenges with hip development, gait patterns, and comfort during movement. Without regular, skilled therapy, there is a real risk of slowed progress, loss of hard-won skills, and future orthopedic complications.

Lilia’s care team has recommended a three-week physiotherapy intensive every three to four months, ideally consisting of two one-hour sessions per day, five days a week. Each intensive includes approximately 30 sessions and costs about $4,200. Over the course of a year, this totals $16,800, in addition to her regular ongoing therapies. Lilia will likely need this level of support for the foreseeable future, especially during these early years, and the financial weight of this care is significant for our family.

Our goal has never been to “cure” Lilia or change who she is. She is beautiful, loved, and deeply treasured exactly as she is. Our hope is to give her the best quality of life possible - to support her body as it grows, to strengthen what is weak, and to give her every opportunity to use the abilities God has given her. 

Unfortunately, the therapies that support this kind of progress are costly and largely not covered.

This summer, we are hoping to travel to Vancouver for a 20-day intensive therapy period. The intensive we’re hoping to pursue combines focused physiotherapy alongside a medically supervised neurological support therapy commonly used in rehabilitation settings. This care is not offered in Kelowna and would be in addition to Lilia’s regular therapies throughout the year. Between specialized therapy costs, and short-term housing, we anticipate this trip will cost approximately $15,000.

We have applied to multiple funding organizations and assistance programs, but at this time, we have not received funding for the upcoming year. We are stepping forward in faith, trusting God to provide.

Any funds raised will go directly toward Lilia’s therapy and care needs. If there are unused funds, or if plans change and the Vancouver trip does not move forward, all funds will be used solely for Lilia’s future therapy needs.

While Lilia will need ongoing therapy beyond this summer, our hope with this fundraiser is to focus on this upcoming intensive and trust God to guide the rest one step at a time.

Like many young families, we are doing our best to navigate rising costs while providing what Lilia needs to thrive. This season has stretched us more than we ever expected.

If you feel led to support Lilia, we are deeply grateful. If you’re able to share this page or keep our family in your prayers, that means more than we can say. Thank you for walking alongside us and for being part of Lilia’s story.

With so much thankfulness,

Victoria, Erwin, Elias & Lilia