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This fundraiser ended on 09/15/12

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Mikey cherished his niece Jacque and her daughter Emma. His request was to help her with her medical expenses.

EMMA HELYN TAFOYA’S STORY


Emma Helyn Tafoya was born on Tuesday, November 8, 2011. She was born in Phoenix, Arizona at Good Samaritan Hospital and was there diagnosed with Cloacal Exstrophy and Short Gut Syndrome.

Cloacal Exstrophy is one of the most complex anomalies that a child can have. It only affects one in every 400,000 children born and each case is vastly different from the others. Not much is known about this rare disorder, but the defect occurs because the body doesn’t fuse together as it should in utero. This results in organs being outside of the body and generally split in two. Emma’s defect began right around where her belly button should be. She had two bladders, two uteruses, etc. Her kidneys were also affected due to the disorder. Her hips were wide open and all her intestines were on the outside of her body. The first surgery repaired a lot of this and it lasted over 10 hours. Though this disorder is very serious, the lack of intestine or Short Gut has proven to be the worse of the two diseases. Emma is unable to eat by mouth because her little intestines can’t absorb nutrients properly. She is being fed through a Broviac/central IV line located behind her ear and a tube in her stomach. She also has an ostomy because there weren’t enough intestines to create an anus. Along with these problems Emma also has issues with her spine and was diagnosed with Spina Bifida Aculta/a tethered spinal cord. This will require another surgery in the next few years and may cause Emma to never have control over her bladder and require an ostomy for the rest of her life. The doctors are hopeful that her spine won’t cause any serious issues with walking or being an active child, but can’t yet be sure. All of this was devastating news to our family and we want to do whatever we can to make Emma’s life as normal as possible.

She was a patient at the Phoenix Children’s Hospital for the first 11 weeks of her life, and was finally released to go home on January 23rd, 2012. Emma’s daily routines thus far have consisted of medications every few hours, IV nutrition, continuous feeds 24 hours a day through a tube in her stomach, daily nursing visits, physical therapies and developmental therapies to mention a few. The young family doesn’t have the resources to meet the financial obligations of traveling expenses, evaluations, medications, supplies, co-pay medical expenses and the fact that she needs 24 hour care. Jacque has had to come to the understanding that she cannot afford a full time nurse to stay with Emma, so she will not be able to continue with her employment. If you know Jacque, you know that this was devastating to her. This has obviously caused financial problems for Jacque and Devon, and they aren’t qualifying for much assistance through the state or government. Losing insurance is something else that they are dealing with, but they are currently trying to qualify for AHHCS.

Emma has come a long way since birth, but still has a long way to go. She has already endured three separate surgeries on her intestines and one on her clubbed foot. Unfortunately she will need more procedures in the near future. At times like these the help of friends, family and community is greatly needed and appreciated to make the outcome successful for Emma, Jacque and Devon.

This will be a life-long battle and we need all the help we can get!

Thank you for your prayers,

Devon, Jacque, and Emma Tate-Tafoya and Mikey
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