# TeamCeciStrong 2020 Medical Fund

38158966_1577023283252267_r.jpeg((Cecilia Marie and Jenni Pulos)) 

We are setting up this supportive fund as requested by family, friends and our wonderfully supportive community members-as a way to help our family during our sweet and brave 14 year old girls battle against multiple medical conditions that have left our family split between hospitals and home. 

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 8th 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.

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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.

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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. 

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Our S.B. warrior fights everyday 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 December 2019 Ceci has had 72 major surgical procedures (yes -72 at age 14), has spent months inpatient at Children’s Hospital of Illinois separating our family (1.5 hours away from home) and other 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 2nd Medi-port because her veins are no longer viable ☹

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2019 was truly the hardest year that Cec and our family has had.

Our beautiful daughter was in the hospital so much that I ran out of FMLA days to cover my time off and I did not have any benefits for paid time off. Our children is very close, and this last hospital stay affected our family greatly. We were worried sick about our Princess and also missed each other greatly.

Ceci was in the hospital in and out of ICU, Intermediate care and General Pediatrics from July- October. She required 5 surgeries, around the clock port line antibiotics to combat severe spinal infections and kidney infections and, wound vacs and drains, supportive medications and oxygen to keep her comfortable and stable.

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.

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Ceci is home right now but things can change in an instance. She is home bound a majority of the time to prevent another illness putting her back in the hospital, is unable to attend public school, received PT and OT at home along with supportive nurse visits to change out her port needles.

I administer port line fluids daily along with several rounds of medications to keep Ceci healthy and home.

We continue to battle many things at this time and there has already been discussion of Ceci needing another major surgery on her Intestines and her Bladder sometime in the next few months that will leave us separated again and our sweet girl inpatient and fighting to heal.

Unfortunately, it is something absolutely necessary, but we all know that sis needs more time to heal.

Ceci sees many specialists to keep up with her complex medical status and this means loads of appointments, testing and visits on a monthly schedule. She is up to 9 specialists.

So, this fund has been set up as a way for others to help us help our baby girl.


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It will help fund gas back and forth to the specialists and hospitals, car repairs, medication costs, medical supply costs, meal costs while on the road and inpatient, unpaid bills due to time off work and any other costs related to caring for sis.

Please do not feel obligated to donate

Prayers are always accepted as well, and we believe strongly in the power of prayer. Our faith in our Lord Jesus has helped us through the darkest of times. And knowing that others are also praying by our side through the good and bad helps our hearts feel less heavy and reminds Ceci that she can do this!

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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

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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.


38158966_1577038475326299_r.jpeg((Ceci and Miss Illinois Ariel Beverly))

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Donations

  • Edie Hiler 
    • $25 
    • 7 mos
  • Meg Hott 
    • $45 
    • 8 mos
  • Cristina Amador-Perez 
    • $20 
    • 8 mos
  • Marji Boeye 
    • $100 
    • 8 mos
  • Gary Furuta 
    • $50 
    • 8 mos

Organizer

Alexis Leihsing 
Organizer
Rock Island, IL
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