Will you fight for Safety for Ceci? Please share Cecis story and her need for safety. Ceci is a beautiful soul, bright eyed 9 year old little girl that has a love for life and everything it brings her way. Shes heading into the 3rd grade this fall and loves doing junior theater, being a girls scout, volunteering, horse back riding, and being a big sister to two little brothers. Ceci is just like every typical 9 year old little girl except for the fact that our lord gave her an exceptional amount of strength and faith to take on a medical journey that most will never experience or see. Ceci entered this world on a rainy morning, 4 weeks too early and was ready to make her appearance into this crazy world. She was born by emergency C-section with Spina Bifida,Hydrocephalus, Arnold Chiari Malformation, a heart defect, multiple orthopedic disorders, kidney issues and other medical conditions. She had breathing complications and was rushed to the NICU without anyone knowing what outcome my sweet girl would have. We knew that she was going to be born with these medical challenges as early as myself being 4 1/2 months pregnant but throughout the whole pregnancy continued to hear that her outcome would not be known until she was born. The scariest of which was that she might not make it. Within 5 hours of birth Ceci had her first major surgery of which would be many, to close her open Myelomeningocele lesion. The next 11 days would be spent in the NICU having test after test performed while she fought to go home and thrive. And finally we did. I did not know what kind of battle Ceci would have ahead but from the very first moment that i laid my eyes on my little fighter i knew that as long as she would fight i would be by her side to support her, love her and give her everything that she needed to make the most of life and love it! Fast forward 9 years later and this girl has fought so very hard and continues to everyday. She has had 30 major surgeries including surgeries to repair her clubfeet, deteether her spinal cord, to control her hydrocephalus, battle split ventricle syndrome, help manage her neurogenic bowel and bladder, repair broken bones, hips dislocations and many more. She has spent countless days inpatient at many different hospitals, has endured many ER visits, has had every test and procedure imaginable and has to see 9 different specialists on a regular basis to stay as healthy as possible. Cecis list of diagnoses now includes spina bifida L3-L4, hydrocephalus, arnold chiari malformation type 2, scoliosis, neurogenic bowel and bladder, lordosis, GERD, loss of sensation in her lower extremities, paralysis and severe osteoporosis. The biggest challenge that we battle as of now seems to be her severe osteoporosis. Her lower extremities are so frail that she has endure more than 15 fractures over the past few years some occurring from the slightest pressures. We have to be very cautious with her legs, hips and feet so we do not bring about any new breaks. It is so scary because her leg bones resemble those of an infants on xray and her DEXA scores are those of an 85 year old woman. Doctors have tested her for additional disorders including brittle bone syndrome only to be left without answers. She takes high doses of calcium and vitamin D and undergoes hospitalized IV infusions every 3 months to try to stall the deterioration and rebuild some of the loss. This is the same medication used on individuals with bone cancer and brittle bone disease. Its a powerful medication that thankfully has shown good results so far. Ever since Ceci was born i have done everything in my power and reach to keep her safe and give her the independence that so many of us take for granted including fighting for a ceiling lift system, power wheelchair and every other device that she has needed. But this time i need help and i have to reach out. Cec is growing and will continue to and right now our mode of transportation for her is a big safety hazard. We have a minivan that has an outside wheelchair lift attached to it for transport but our problem is getting Ceci in and out. Right now i am physically lifting Ceci from her wheelchair and into the car. And each time i do this, its a risk. I risk dropping my sweet girl, bumping her fragile legs into the van doors or into anything else that can cause trauma. Which in return could cause another horrible fracture What we desperately need to keep Ceci safe when we transport her to the 9 specialists that she sees, therapy and anywhere else is a wheelchair accessible van that would allow her to stay in her wheelchair and never be lifted out. I have looked into every possible program in the state to see if anyone could help with the cost and unfortunately there is nothing to help. So we are reaching out to our community, family, friends and the internet asking for help for something that is a need, not a want. We need to keep her safe, we need to make this a reality and protect Ceci every way that we can. As a mother her safety is my ultimate goal and this is one thing that i am very upset to say i am unable to give to her without help. Please help in any way that you can. Whether it be by making a donation, purchasing her awareness bracelets, or just sharing her story. We have all seen the power of the internet and how quickly a need can spread and a dream can be made to come true. ~Sharing is Caring~ Thank you so much for learning our story. Lots of love and hugs, Alexis and Ceci ~Spina Bifida Fighters and Survivor~ -------------------------------------------------------------------------------------- Donations can be made at gofundme/safetyforceci or mailed to: Cecilia Padillas Benefit Fund IH Mississippi Valley Credit Union 4206 5th Avenue Rock Island, IL 61201 -------------------------------------------------------------------------------------- Ordering information for: ~ Cecis Spina Bifida Battle~ support wristbands. Wristbands are $2.00 if picked up or delivered locally, $4.00 for U.S. orders and $6.00 if shipped outside the U.S. Payments can be sent to paypal as friends/family payment (to avoid an extra fee) to ceciliaspage1@yahoo or checks, money order or cash can be mailed to: Cecilia Padillas benefit fund 915 8th street Rock Island, IL 61201 Please remember to include a name and address to ship them to. -------------------------------------------------------------------------------------- Wanna help Ceci meet Ellen Degeneres and get help with spreading her story around the world? Please click on the link below to write miss Ellen about our super Ceci and change her life. ellentv/be-on-the-show/433/
Posted on: Mon, 14 Jul 2014 14:57:26 +0000
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