We are setting up this supportive Medical fund as requested by family, friends and our wonderfully supportive community members-as a way to help our family during our sweet and brave 15 year old girls battle against multiple medical conditions that have left our family split between hospitals and home.
Ceci does not have full medical insurance coverage -due to the need for out of state Medical care which is resulting in excessive amounts of medical bills, mom is unable to continue working, and the need for travel expenses back and forth to the hospital including meals for her family.
Cecilia Marie or Ceci as many of us know her by :-) is a bright and beautiful teenage girl. She loves music, the theater, baking, spending time with family and friends, Ellen DeGeneres of course and volunteering to help other kids in the hospital and Children’s Hospital of Illinois- Our home away from home.
Ceci is currently in her 9th grade year of school but unfortunately due to several medical battles the past 2 years she has not been able to attend one day of public school this year. Ceci was born with Myelomeningocele or what is known as Open Spina Bifida. It is the most Severe type of Spina Bifida- which is a Congenital birth defect that affects the development of the spinal cord, brain and the tissues that enclose them. With Myelomeningocele the spinal canal remains fully open along with several vertebrae in the spine. Ceci’s spinal canal was fully exposed from Lumbar 2-4 and her spinal cord and nerves were also fully exposed from her back. Ceci was born prematurely at only 35 weeks by emergency Caesarean and was rushed into the Operating room for her 1st surgery at only 1 hour old.
The doctors did their best to prevent infection in Ceci’s spine and brain by taking her into surgery to cut away nerves that were damaged and pushing her spinal cord back into the canal to prevent further spinal and brain damage. She spent 2 more weeks in NICU due to several other related medical conditions. Ceci has several medication conditions and disorders related to her initial diagnosis and effects of treatments.
Ceci’s diagnosis list includes- Myelomeningocele L2-L4 (Spina Bifida) Hydrocephalus requiring VP and LP Shunts- the buildup of fluid in the cavities (ventricles) deep within the brain. The excess fluid increases the size of the ventricles and puts pressure on the brain. Arnold Chiari Malformation Type ll- structural defects in the cerebellum. Type II is also known as "classic" Chiari malformation or Arnold-Chiari malformation.
In type II Chiari malformation, both the cerebellum and the brain stem extend into the foramen magnum. Paralysis: Paraplegia- Ceci does not have feeling from the knees down or muscle control. She uses a Power Wheelchair full time. She has not had the strength in her arms to use a manual chair for years, due to repeated infections and long hospital stays GERD- Gastroesophageal refers to the stomach and esophagus.
Reflux means to flow back or return. Therefore, gastroesophageal reflux is the return of the stomach's contents back up into the esophagus.
Osteoporosis (she’s endured over 25 breaks, some requiring major surgical intervention) -which literally means porous bone, is a disease in which the density and quality of bone are reduced. As bones become more porous and fragile, the risk of fracture is greatly increased.
Muscle Rigidity- also known as muscle tension, rigor, or stiffness, is one of the most common causes of muscle pain. It's characterized by the inability of the muscles to relax normally. The condition can affect any of the muscles in the body, causing sharp pain that makes it difficult to move.
Neurogenic Bladder- is the name given to a number of urinary conditions in people who lack bladder control due to a brain, spinal cord or nerve problem. Due to this Ceci has to self-Catharize but has repeated UTI’s and Kidney infections from this issue. Some that require hospitalization.
Short Term Memory Loss- When a person experiences short-term memory loss, he or she can remember incidents from 20 years ago but is fuzzy on the details of things that happened 20 minutes prior. Ceci suffers from short term memory loss due to repeated brain surgeries.
Tethered Cord Syndrome- is a rare neurological condition. Tethered cord syndrome occurs when tissue attachments limit the movement of the spinal cord within the spinal column.
Syrinx of Spinal Cord- A syrinx is a fluid-filled cavity within the spinal cord (syringomyelia) or brain stem (syringobulbia). Predisposing factors include craniocervical junction abnormalities, previous spinal cord trauma, and spinal cord tumors.
Anemia- Anemia of chronic disease is a multifactorial anemia. Diagnosis generally requires the presence of a chronic inflammatory condition, such as infection, autoimmune disease, kidney disease, or cancer. It is characterized by a microcytic or normocytic anemia and low reticulocyte count.
Our S.B. warrior fights every day to live her life to the fullest and to overcome the stress of living with chronic and painful disorders. Although she has battled more than most ever will, Ceci is an inspiration to our family and you rarely catch her without a smile on her face or a giggle coming out of her heart.
As of August 2020 Ceci has had 63 major surgical procedures (yes -63 at age 15), has spent months inpatient at Children’s Hospital of Illinois separating our family (1.5 hours away from home) and University of Iowa Stead Children's Hospital (hour away from home) , and multiple local hospitals, has had to endure every test under the sun and has been stuck for lab work, infusions and blood infusions more than her veins can stand. She is on her 3rd Medi-port because her veins are no longer viable ☹
Due to our sweet girl battling so much in the past 2 years our family’s financial situation has snowballed into an ugly beast and we are on the verge of bankruptcy because no matter how hard things get financially, our little girl will NEVER fight alone.
Hitting the Share button on this campaign and her prayer page- www.facebook.com/prayingforcecilia Helps spread the word for others to join us in supporting our angel through Prayer, support, love and donations <3 We post updates at her Facebook page and share pictures and videos of our girls battle and strength.
If you would like to help but do not want to donate here, no worries Gift cards for food, gas and others can be sent to our home address: Cecilia Marie
915 8th street
Rock Island, IL 61201
Ceci collects Encouragement cards and posts them all around her bedroom to display the support she has and helps her through it all. Cards are much appreciated and enjoyed very much <3 <3 <3
Thank you for sharing her story and for your support.
Alexis Lynn Leihsing
Rock Island, IL