They say it takes a village to raise a child and right now we are looking for some financial help from our village and community for our daughter, Charlotte.

Charlotte was born premature at 2 pounds and spent the first 47 days of her life in NICU. To our joy she triumphed through the NICU journey and came home relatively healthy, having some low muscle tone issues that were assumed to be related to her prematurity. Despite that challenge, she thrived hitting most expected milestones (she never could crawl) and enjoying life. At 16 months old, she developed double pneumonia from a nasty cold that caused her to go into Acute Respiratory Distress Syndrome. She spent several weeks intubated and fighting for her life in the hospital before a trach was placed and the decision was made to allow her to heal at home on a home ventilator. This tragic event began our journey into discovering a deeper problem that took Charlotte from a relatively normal infant, into a medically complex kid. In March of 2024, Charlotte suffered from a Vitamin K deficiency brain bleed which led to brain surgery to alleviate pressure on her brain. While recovering from her brain surgery, she caught another virus in the hospital which led her back into respiratory distress and caused her heart to stop for 12 minutes. Thanks to the wonderful and quick action of the staff, Charlotte was resuscitated without cognitive injury on her brain. These events led us into lots of testing trying to answer the what and why of our daughter having a random brain bleed and being so sick. After several genetic tests and a muscle biopsy, Charlotte's team believe that Charlotte is pioneering a new genetic condition that is similar to muscular dystrophy. At this time, she is the only human in the world to exhibit the set of symptoms she does. We have been working with her team to understand what this means and figure out what Charlotte's future looks like. The combination of a brain bleed, a cardiac arrest and her unknown genetic condition has caused a severe loss of motor function and greatly impacted her quality of life. Charlotte went from almost walking on her own at 16 months to not being able to lift her head up.

We have done everything we can to help Charlotte on her rehabilitation journey. We are hopeful that we might be able to gain more skills back that will help Charlotte live as independently as possible as she continues to grow. We are asking for help to get her to a specialized clinic in Iowa that would help her recover more gross motor skills and improve her quality of life using red light therapy and a device called the Emfield.

As you can imagine, the medical expenses alone have been debilitating for our family. We need help raising the funds to get her to this clinic. Our goal is to raise enough funds to pay for her therapy at this clinic and to help alleviate other rehabilitation costs associated with our goal in helping Charlotte gain more mobility and independence.

We appreciate any donation and consideration from our community to help us achieve these goals and support Charlotte. Thank you!