This Group is being created for our courageous little fighter, Cecilia Marie age 18. Cecilia or Ceci as so many know her by, was born with many odds stacked against her health wise, but she fights strong each and every day to live her life to the fullest. Cecilia has been diagnosed with Myelomeningocele (Spina Bifida) L3-L4, hydrocephalus with VP Shunt, Arnold Chiari Malformation type 2, Osteoporosis causing multiple lower extremity fractures, Kidney Disease, Neurogenic Bladder, Paraplegia, Tethered Spinal Cord, Scoliosis, Lordosis, Tachycardia, Anemia, GERD, reoccurring sepsis status, and more. Ceci is on several medications throughout the day to help prevent infections, control her bladder spasms, for her GI system, her G.E.R.D, to help prevent breaks, and to help with cathing. She is on a strict every 3 hour catherization schedule in which she caths herself through a stoma in her belly button that connects right to her bladder. Cec can no longer walk with braces and uses a electric wheelchair full time to get around. Ceci has had 80 major surgeries to date and will have more in her future. Some of the surgeries she has had include spinal cord deteetherings, bladder surgery, repeated shunt placements, Endoscopic third ventriculostomy, hip surgeries, and shunt pressurization. She has been put through almost every test and procedure imaginable to help keep her healthy. Our days have been filled with MRI’s, cat scans, ultrasounds, x-rays, blood tests, swallow studies, shunt series, shunt taps, echos, cystograms, urodynamics, dexa scans and much more. She sees 9 dr’s on a regular basis that include a pediatrician, urologist, neurosurgeon, gastroenterologist, orthopedist, eye specialist, endocrinologist, dentist and pediatric surgeon. Almost all of her specialists are located an hour and a half away at Children’s Hospital of Illinois and one hour away at University of Iowa Stead Children's Hospital. She has spent countless days as an inpatient due to surgeries, infections and bad luck that we have lost count. Almost half of Ceci’s life has been filled with long leg and body casts due to complications from clubfeet, dislocated hips, and her severe osteoporosis. She has had over 20 leg fractures caused by the lightest pressures. As you can see Cec has been through many trials in her short life. But through this all this little girl is truly the light of my life : ) She is my hero and is a hero to hundreds of others as well. She rarely complains and never feels sorry for herself. She does not believe that the world owes her anything and never takes no for an answer. She is now 18 years old and attends public school on a daily basis. She is in the 12th grade and enjoys watching movies, listening to music
(you will always catch her with an ear bud in at least one ear), spending time with her brothers and nephews, painting, collecting Squishmallows, shopping, volunteering, getting her hair done and spening time with her friends. I created this page as a way to keep prayer and good thoughts going when Ceci faces the hard challenges that her medical issues bring. We find ourselves in the hospital quite a bit and we believe in the power of prayer. Thank you for joining our prayer page and feel free to share Ceci’s page and story with others that feel that the power of prayer can heal all things. Lots of Love, Hugs and Appreciation,
Alexis and Ceci
~~~Spina Bifida Fighters and Survivor~~~
Cheer mail address-
Cecilia Marie
915 8th street
Rock Island, IL 61201
