Sweet Eden's Medical Journey

Hi, my name is Nina, and I'm fundraising for a member of my work family, Lacey, and her daughter, Eden. Lacey did include an introduction, so I hope you enjoy reading about Eden and her tenacious spirit!

Thank you, first and foremost, for taking the time to read about Eden’s journey – we are so appreciative of all the support from friends and family while we navigate this next part of our lives. Eden Trinity Pinkley is my beautiful four-year-old daughter and the light of my life. She is intelligent, courageous, sassy, opinionated, and the epitome of kindness. With the challenges she has already experienced in her short little life, Eden has defied many odds and continues to be my daily reminder of what resiliency and genuine compassion genuinely are.

Eden’s medical background has been complicated since before she entered the world. While in utero, Eden suffered from a stroke, which eventually resulted in her being diagnosed with cerebral palsy a few months short of her first birthday. Cerebral palsy severely impacts Eden’s ability to walk due to the residual scar tissue that has blocked the neural pathway in her brain responsible for sending signals to her extremities. It inhibits her ability to make the conscious decision to put her right foot flat, disrupting the developmental growth of her ligaments, bones, and muscles.

During our journey, we've already completed botox injections and serial casting. Eden attends PT and OT twice a week and wears a specific leg brace, which is used to improve walking patterns by reducing or limiting movement of the lower leg and foot and by supporting weak muscles. While she has made substantial progress since transferring to UNC Chapel Hill, we are now having to move forward with intensive surgical options because of the severity of her condition and the potential impact it can have on her quality of life. The surgery Eden will be undergoing on November 21st is Achilles tendon lengthening, in which the Achilles tendon is stretched to allow a person to walk flat-footed without a bend in the knee and bring relief to chronic pain previously experienced. After surgery, Eden’s recovery will take around 3-4 weeks. While we are optimistic about the outcome, there are some significant adjustments that we will be making to ensure Eden has the best care and support system throughout this process.

As a single mother and Eden’s sole provider, I have decided it will be in her best interest to take a leave of absence from work for three weeks to be with her during this challenging time. Eden’s primary physician and the rest of her medical team have also encouraged me to take this time off. While my job provides paid time off and vacation time, I had to utilize mine earlier this year after being involved in a major car accident. We are truly blessed to have insurance that will fully cover her surgery and other medical treatments, but out-of-pocket travel costs will accumulate quickly, as well as monthly bills for our home while we are away.

Since I will be taking unpaid time off, we are thankful for donations to assist us during our three weeks away while Eden recovers. This will include coverage for rent, utilities, car insurance, and any other out-of-pocket expenses related to our trip. We know that life is difficult for many people right now, so please know how grateful we are for your time and attention. Hug your kids a little tighter, kiss their foreheads a little longer, and enjoy their presence always.

Thank you, all. Your kindness means the world to us!

Lacey - A Cerebral Palsy Mom