Most families get assistance paying for their service dogs through agencies that cater to the child’s special needs, ie Paws for a Cause or Leader Dogs for the Blind. There is no such agency to help with Danielle’s dog so we are left to fund the training on our own. The training will cost $14,000 which includes all of the training she will need for life.
Danielle was born with a rare birth defect called Gastroschisis, where the bowels escape through a hole in the baby’s abdominal wall in utero. In her case, the hole from which they were protruding closed, cutting off blood supply to most of her intestines and causing them to die. Normally, the small intestine should be about 5 feet long. By the time the doctors pieced together what was left of healthy bowel, Danielle was left with 25cm, or less than one foot. When we met her at the hospital, the doctors told us she may not make it to be a year old.
Danielle cannot eat or drink by mouth due to the little intestine that she has and the trauma it has had over her lifetime. She is kept alive by a liquid called Total Parenteral Nutrition or TPN. Total parenteral nutrition (TPN) is a method of feeding that bypasses the gastrointestinal tract. Fluids are given into a vein to provide most of the nutrients the body needs. In her case, the TPN goes into a vein directly above her heart. TPN delivers a mixture of fluid, electrolytes, sugars, amino acids (protein), vitamins, minerals, and often lipids (fats) into an infant's vein. TPN can be lifesaving for very small or very sick babies. She is hooked to this pump 20 hours a day.
Danielle also has a tube in her stomach that is hooked to a feeding pump 24 hours a day. This trickles in a specialized formula that keeps the bowels from shutting down completely.
Starting this month, Danielle will now have a third pump hooked to her 20 hours a day that will administer her lipids (fats) separate from her TPN. The lipids she was previously on were killing her liver.
We appreciate any help you can give to help Danielle lead a full life. Thank you.
- Brian Ely
- Heritage School
- Jacquelin J Smiley
- Gayle Ely
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