Selling their home to buy a house that can meet Gracie's needs is not an option as the Fiero's do not live outside their means. They cannot afford to sell and/or buy a new home. Their current home is affordable for them but does not meet Gracie's needs.
Gracie is completely dependent on her parents and continues to grow like a normal preteen. Kimberly had back surgery in 2005 and has difficulty transporting Gracie when Michael is at work. The Fiero's hire a fulltime daycare provider who comes to the house while Kim and Michael work their fulltime jobs. They do not receive any financial assistance in paying for a daycare provider.
Again, please help me raise the money for an elevator so that Gracie can safely have access to all 3 floors of their home and a bathroom with a walk/wheel-in shower to help this family meet Gracie's needs and make her life more comfortable.
Gracie's Story-Our Hero
by Kimberly Fiero
Grace Ann Fiero was born March 14, 2003 weighing 8 lbs 1oz. A beautiful and perfect baby girl. She was quickly admitted to the NICU as she was not breathing well and was started on CPAP. An MRI was done after birth and found that Gracie's ventricles in her brain were much larger than initially found in the ultrasound at 20 weeks gestation. It was a neurologist that gave us a glimmer of hope. He said that no one can predict the future and that the brain can do amazing things despite abnormalities. He said that if we provide the best opportunities for Gracie, she will be able to succeed and be the best that SHE can be.
We chose to be positive and push ahead to offer as much to Gracie as possible to help her have the best and fullest potential.
Grace required assistance with feeding due to poor suck related to her neuroloical challenges. She also had low body tone and required varioius therapies. She was involved with Early On at an early age as well as outpatient therapy to assist with her development and to teach us what to do at home to encourage her development.
Gracie's first seizure was at 6 months old. She was started on anti-seizure medication which she currently remains on.
Around age 5, Gracie was started on a new anti-seizure medication. Overall her health declined significantly. She developed tremors in her eyes, mouth, and hands. Feeding her pureed foods became more difficult. Respiratory issues became more prevalent. Emergency Room visits and hospitalizations became more frequent.
In December 2009, Grace had a gastrostomy tube placed as well as a nissen fundoplication to help with her feeding and medication management.
Grace has had numerous hospitalizations over the years, the most significant of which was February 9, 2011. Gracie's illnesses come on suddenly with little or no warning. That day she was transported by ambulance to the ER having trouble breathing and became unresponsive. She was diagnosed with Sepsis. She was intubated and on a ventilator for 2 weeks. She also suffered from pancreatitis. She had multiple IV's, tubes in her belly, a catheter...so stressful. We not only worried about her health but also about the future. Gracie amazed everyone...she came home to us on March 6th, just 8 days shy of her 7th birthday. Such a fighter...such a hero!
Grace developed scoliosis at an early age due to her decreased muscle tone. She wore a hard brace on her torso all day to help support her chest and correct the curve temporarily. She also wears braces on both feet . In July 2011, Grace had a spinal fusion. 2 titanium rods were placed along her spine to help correct the significant curve and prevent worsening effects on her other organs.
Gracie attends a special school where she is able to receive adaptive instruction and activities to promote her learning. Because Grace is considered severly and multiply impaired, she is eligible to receive this special education.
Grace has mulitple large pieces of equipment in her home to assist and help in her care...a wheelchair, a stroller, a toileting chair, an activity chair, a stander to help increase her bone strenth as she is unable to bear weight on her own, a pacer to help her mobilize, and airway clearance system, a bath seat, and a ramp.
Gracie takes over 10 medications daily, many of which have numerous side effects. She has been on many antibiotics over the years to help treat the mulitple respiratory infections that she has battled.
Grace has been on multiple doeses of steroids over the last year for reapirtory illnesses and as a result, she has gained over 20 pounds. It has become difficult to lift and transport her as she now weighs over 90 pounds.
Gracie Ann has endured more in her 11 years than most will in their entire lifetime. She has never been able to run, walk, talk, and no longer receives nutrition orally. She cannot verbally protest to anything. She cannot share her hopes and dreams or her worries and fears. We do our best to interpret her thoughts. We try to advocate as best as we can for our remarkable daughter. We call her AMAZING GRACE as she is such an AMAZING young lady. She is such an inspiration. She is loved. She is wanted. She is a true hero.
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