Colby Raine was born at 24 weeks weighing 1 pound 9 ounces. She is a surviving twin. Her sister passed away 4 days after they were born (one of the worst days of our lives).
After birth, the babies were transported to the NICU at Arnold Palmer Hospital. Due to her early arrival, Colby was on a ventilator for an extended period of time and now has chronic lungs. Shortly after arriving, she developed a bleed in her head which lead to her having hydrocephalus and cerebral palsy. As a result, she now has a VP shunt (her 6th to be exact). She also developed retinopathy of prematurity and both of her retinas detached causing her to be blind. Colby became Miss Colby Raine Train the little baby that could.
Colby spent a total of 6 months in the NICU. Since that time, she has grown into quite the character and is an inspiration to many. Colby is blind, has developmental delays, cerebral palsy, seizures, dysphagia, neurogenic bowel/bladder, Gtube dependent, and scoliosis. Pneumonia and medical errors almost took her from us in December 2016 but once again her determination prevailed.
Thankfully, her vocabulary is impressive. She talks to us all the time and loves music. She is an amazing little girl that works so hard and is such a blessing to us.
Now she needs surgery to straighten her back. It’s a very serious surgery with her history of infection and clotting. The surgery will take place on March 27, 2018. After surgery, Colby will resume speech, physical, occupational and vision therapy. Right now we transport her in our expedition but that will not be possible after the surgery. She’s too long to lay in the expedition. We plan on setting up medical transport to bring her home from the hospital but we are in need of a wheelchair van to safely transport Colby to all of her therapies and appointments. Unfortunately, wheelchair vans are expensive and difficult for our family to purchase alone. Colby is 12 years old and we have always been able to transport her lying down in our expedition. Unfortunately, after the surgery we will no longer be able to transport her in the expedition as she is too long to safely transport that way. She is wheelchair bound and we are in need of a wheelchair van to take her to all of her weekly therapies and doctors appointments. We also travel with equipment (oxygen, pulse ox, nebulizer, vibration vest and feeding pump). With all her equipment and her size we have outgrown our expedition. A van will also have a place for us to change her diaper which is another issue with a child her size that is incontinent. Safe transportation is vital to her care.
The funds generated & accumulated in the course of this campaign campaign will be directly distributed toward the immediate purchase of a wheelchair van for Colby.
Colby Raine Train the little girl that can.
- Karly Ballard Patterson
- Myron Mock Yen
- Vincent Ciolino
- David Kaw
- Tracey Caporuscio
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