Sweet 3 year-old Louisa Wren (Lulu) has a disorder called CDKL5, a rare genetic condition that causes uncontrolled seizures and doesn’t allow the brain to develop properly. In her short life she has undergone a myriad of tests and pokes and the medical bills have piled up. Currently, Lulu is on hospice, and off all heavy medications. A miracle is what Lulu needs.
A medical crisis of any kind is enough to deplete a family financially and emotionally - let alone one concerning the intense needs of a darling three year-old girl. Let’s pour practical love on the Nickel family by donating money to cover their medical needs and alleviate some stress as they navigate a world they’ve never trekked before.
Here is a bit more of their story: Jeff and Sara Nickel are amazing people. Jeff is a veterinarian who is deeply invested in making a difference in animals’ lives. Sara is a labor and delivery nurse who represents the heart of this caring field. She takes pride in her patients and genuinely celebrates with them through their new or renewed journey into parenthood. They have two beautiful children, Grover and Lulu. Both Jeff and Sara continue to give of themselves emotionally, spiritually and intellectually, despite their heartache at home.
They have been living with uncertainty and sadness since their daughter’s medical journey began at the precious age of five weeks. So began their journey to help their daughter, navigate their young son’s reality of having an acutely ill sibling, and maintain and nurture their marriage. Lulu was initially diagnosed with epilepsy but after extensive testing, hospitalization and medications, a rare genetic diagnosis of CDKL5 was confirmed at 1 1/2 years of age. Lulu shares this with only 600 people worldwide. Despite this diagnosis, Louisa Wren was just herself, a precious, desperately loved little girl called Lulu. She learned to sit, stand and take her first steps with assistance. She was potty trained and her parents can still hear the three words they were so deeply proud to hear her speak, “Mama, Dada, and Night Night.”
In April 2015 her parents began to notice a profound deterioration in her development. Instead of rejoicing in her advancing milestones each night, they whispered their growing concerns to only each other. Lulu was quickly losing all that she had gained. By May they believed she was dying. In June, the week of her third birthday, she was enrolled in hospice. By August, Make-A-Wish granted them a “rush wish” in order to provide a much needed respite from day to day stresses. They had a wonderful trip but their heartsick reality met them upon their return.
Today Lulu is almost 3 1/2 years old. Seizures continue to be a very real concern and she has lost all purposeful use of her limbs. She has definitely not lost abundant love, care and hope. Sleep deprived nights are common in their home although big brother Grover, with his new demands of kindergarten, is shielded as best he can be by the people in his life. His two main comments about his sister fluctuate between two streams of 5 year-old thought: “When will Lulu grow up enough to play with me?” and “Don’t be sad Mom… She gets to go to Heaven and you will be together again soon.” It has been a roller coaster. The kind you can’t really even imagine exists. But it has been covered with grace, a hunger for knowledge and an acceptance of God’s “Never Stopping, Never Giving Up, Unbreaking, Always and Forever Love” for one little, very important person’s life’s path.
We are humbled in watching their eloquent and creative parenting, their true love for one another and their unwavering faith. The last thing they want to bring attention to is their suffering finances. The expenses of Lulu’s medical treatments, medications, hospitalizations, daily therapies, special foods and copays have depleted their savings and become a serious financial burden. This is being further compounded by Sara’s need to take time off of work to care for Lulu. If you know Jeff and Sara (or even if you don’t) we are asking for your help. That help will be appreciated greatly whether it is in the form of money or prayers. We want to show our friends who have endured profound hardship and loss as parents that their community of family, friends and even strangers are willing to “show up” and begin to make a positive difference in their lives. May you, too, be blessed as you donate to sweet Lulu and her family.
Quoted by “The Jesus Storybook Bible” by Sally Lloyd-Jones