Nominated by a devoted counselor from Family Service League, the Neikens Family is one of our wonderful 2021 Adopted Families.
UPDATE: We would like to thank our friends and colleagues who have donated and helped The Neikens family. Because of you, we were been able to make significant changes to their lives and have lifted some of their burdens. With our funds and with the generous support of in-kind donors, we have created a stay-cation spot right in the Neikens’ backyard. Because of Casey’s condition, medical bills, and the spread of COVID-19, family vacations are nearly impossible for the Neikens. Now, they can now enjoy a shaded patio, and Casey has access to a soothing jacuzzi and a wheelchair-accessible ramp from his front door.
Big shout out to Maggio Environmental, Condos Brothers Construction, Sierra Tree Service, and Ocean Spray Hot Tubs & Saunas for their generous contributions.
Casey Neikens is a 13-year-old boy who was diagnosed shortly after birth with Epidermolysis Bullosa (EB), a group of rare diseases that cause fragile, blistering skin. The blisters may appear in response to a minor injury, heat, rubbing, scratching, or adhesive tape. In severe cases, such as Casey’s the blisters may occur inside the body, such as the lining of the mouth or the stomach.
Casey was referred to Family Service League’s William Floyd Family Center for counseling in dealing with his medical condition and anxiety surrounding it.
“At times, Casey is known as the 7th grade “mayor” because of his quick wit, strong will, and knowledge of everyone. His ability to engage anyone in conversation ensures he is known by all, and those characteristics are the very ones that help him fight his disease every day.
His family has always allowed him to live each day as “normal” as possible by attending school and hanging with friends. He is also a self-proclaimed baker and foodie who will often request to be remembered if we get donated cake or brownie mix or to be the recipient of a small snack buffet after school in our office before his counseling sessions.
Despite the difficult circumstances they endure daily, I have never met a more loving, wonderful, humble, and caring family. The love and nurture I witness when I am meeting with them is extraordinary, not just between themselves but also with those around them. When assistance was given to the family during the recent holidays, Casey’s mother turned to me and said, “Isn’t there someone else out there who could use this help?” I responded, “Not anyone else in the entire world,” says his FSL counselor.
According to Beth, his mother, the family has always struggled financially but once Casey was diagnosed with EB, their world was turned upside down and the financial difficulties continue to mount. Casey needs an exorbitant amount of medical care every day just to remain out of the hospital. He has full-time nursing at home and at school. He receives physical and occupational therapies several times a week and he has the services of a full-time aide (in addition to his nurse) at school. Casey continues to receive ongoing care and surgeries as needed at Cincinnati Children’s Hospital.
A Day in Casey’s Life
A typical day for Casey begins with 2 1/2 hours of unwrapping his body cleaning his skin and treating any new blisters. Once that is done, he is re-wrapped with clean glaze bandages. The wrapping and unwrapping is extremely painful but is necessary because he is at extremely high risk for infection which could be fatal.
After his morning skincare, he is fed through a g- tube for his daily nutritional needs that are not met by his food intake. Once he comes home from a day of schooling, he rests, attempts to complete homework assignments, eats dinner, and then goes through the same 2 1/2 hours of wrapping him before he goes to bed.
The Challenges from the Pandemic
During the school year of 2019-2020, Casey had 6 surgeries to correct skin that had fused over his hands, tongue, and eyes so he can maintain their movement and use. These surgeries bring Casey an increasing amount of anxiety due to the pain of EB and then the pain of the surgeries.
Since the COVID outbreak, Casey’s family was homebound for fear of infection. His sister remained in the virtual learning classroom with Casey for fear she could potentially bring the COVID infection home to her brother. Casey’s father is an RN and was unable to work for 6 weeks at the beginning of the outbreak because there was so much unknown about the coronavirus and the potentially fatal outcome for Casey if he became infected.
Although the family has medical insurance, they struggle with the hidden cost of Epidermolysis Bullosa such as bandages, gas, hotels, food, and lodging expenses that are incurred during Casey’s trips to Cincinnati. There is no room in their budget for emergencies or typical life activities such as entertainment and vacations.
How CMM Cares is Helping
After getting to know this family and touring their home, we’ve created a “wish list” that would change the lives for Casey and his family now and for years and years to come.
The Neikens family tends to favor “staycations” over vacationing due to Casey’s increasing pain and medical needs, especially with COVID-19 which could be tragic for Casey if he was exposed or infected. The ability for the entire family to utilize their backyard on a regular basis would increase their quality of life tremendously. Our goal is to upgrade their backyard space to create a safe, enjoyable and easily accessible sanctuary for Casey and his whole family to enjoy. Adding a handicap access ramp, a concrete walkway, and a patio large enough for Casey to maneuver his scooter on his own will provide him with some independence around his own home. We also plan to install an awning to the home to provide easy shade and protection for Casey from the sun as well as enclosing the property with a new fence to keep neighboring pets out. Also, on the wish list is adding a small hot tub and above-ground pool, as the chlorinated water provides relief to Casey’s skin. Swimming is an activity he can do with his sister and friends without pain.
CMM Cares would also like to repair the medical prep area in their home. The Neikens have a dedicated room used as a storage area for all of Casey’s nursing and medical supplies. It serves as a space for the family and in-home nurses to organize supplies, manage Casey’s requirements for the day, and keep notes on his progress. Casey spends 5+ hours per day getting his bandages tended to, and there is a nurse in the home assisting for over 30 hours per week. Not only does this space help to keep all the supplies organized in one spot, but it also allows them to “close the door and forget about Epidermolysis Bullosa (EB) for even a short time.” The space has not aged well; storage closets are broken, drawers are missing and shelves holding heavy medical supplies are warped, sagging or broken. It leaves the family no choice but for the supplies to creep their way into the rest of the family home. We will be updating this room to maximize the efficiency of the space.
If you’re interested in helping us support the Neikens family with in-kind donations, financial support of our plans or if you know local businesses that may be interested in participating in our bringing our Wishlist plans to life, please contact Victoria at vtringone@cmmcares.org.
