Medical students are frequently taught, “When you hear hoof beats, think horses - not zebras.”
“Zebras” are the anomalies, the odd presentations, the diseases so rare that most doctors would not have ever encountered them in a normal medical practice in their lifetime. Often times, the 'Zebras' present like a common illness/disease (the 'Horse'). Addison and Audrina Dick are two adorable little warrior sisters who have been battling an undiagnosed "Zebra" since birth.
Addison was born 6 weeks premature in November 2010; she appeared healthy but soon stopped having bowel movements and has spent the last two years battling Severe Dysmotility, Reflux, Failure to Thrive, Vomiting, Hypotonia, Anemia, Jaundice, Chronic Fatigue and pain, along with frequent infections. For most of her life, she has been unable to have a bowel movement. She spent nearly 9 months fighting a serious bowel infection that left her very ill every day, vomiting and having diarrhea up to 15 times a day. She has extremely poor tolerance to the cold and it caused a year of swelling and hypoxia in her hands, leaving her with permanent weakness in her extremities . At 9 months, she went under anesthesia for a routine procedure and lost much of her acquired skills - a neurological regression. This is often a sign of declining prognosis, but so far she's defied all odds and has made remarkable progress in therapy over the past year, despite being diagnosed as on the autism spectrum.
During a trip to Cincinnati to see a world-renowned colorectal surgeon, Addison's mommy gave birth 10 weeks premature via emergency c-section to little Audrina Skye, who entered the world weighing just 3 pounds. Audrina did really well and her family was optimistic by the time she left the NICU after 4 weeks that she was in perfect health. However, after 8 days at home, Audrina began turning blue - her family learned she was unable to maintain her oxygen by herself and needed to be on oxygen. They sent her home with a special monitor to wake up mommy and daddy when she was having a hard time. Soon after, she began showing scary similaraties to her big sister - vomiting, not able to stool, becoming failure to thrive.
Over the next 7 months, Audrina's condition would continue to deteriorate, and she would go on to be diagnosed with Reflux, Central Apnea, Hypoventilation Syndrome, Supraventricular Tachycardia, Cardiac Dysfunction, Jaundice, Chronic Anemia, Hypotonia, Failure to Thrive, Severe Dysmotility, Metabolic Acidosis, Moderate-to-Severe Dysphagia, Abnormal Hemoglobin Variant, Kidney Issues, and Dysautonomia. She is currently recovering from surgery to place a long-term feeding tube. On of the most difficult parts of the girls condition is that for a reason that is still unclear, the girls are unable to thrive on anything but a special pre-digested formula. So they are able to have NO food or drinks that are not made from this formula. This is extremely difficult for a child who wants to eat and remembers eating normal food. The girls also suffer from an extreme sense of hunger and have no sense of being full - they have spent most of their lives crying for more food. Until they discovered the diet problem, Addison would frequently eat until she threw up, often eating more than 1300 calories a day and still not growing.
Addison and Audrina have made appearances in almost every major children's hospital in the midwest, but continue to mystify their many doctors. Testing so far has yielded some clues, and the family will be traveling to Georgia in October to seek another opinion from a leader in the field of difficult to diagnose disorders. Recently, the Chasing Zebras Fund was established - a fundriaser to help out the family with the many costs of raising not one, but two children with special needs.
Please join us in our prayers, tears, and triumphs as we continue seeking answers for these sweet girls. We are on facebook at https://www.facebook.com/chasingzebrasblog. If you are able to donate to the Chasing Zebras Fund, you can do so at http://gogetfunding.com/project/chasing-zebras-fund
Ecclesiastes 3:1 says, "To everything there is a season, a time for every purpose under heaven." We know one day the answer will be revealed to us and we hope it is very soon.
Thank you for your support!
Addison was born 6 weeks premature in November 2010; she appeared healthy but soon stopped having bowel movements and has spent the last two years battling Severe Dysmotility, Reflux, Failure to Thrive, Vomiting, Hypotonia, Anemia, Jaundice, Chronic Fatigue and pain, along with frequent infections. For most of her life, she has been unable to have a bowel movement. She spent nearly 9 months fighting a serious bowel infection that left her very ill every day, vomiting and having diarrhea up to 15 times a day. She has extremely poor tolerance to the cold and it caused a year of swelling and hypoxia in her hands, leaving her with permanent weakness in her extremities . At 9 months, she went under anesthesia for a routine procedure and lost much of her acquired skills - a neurological regression. This is often a sign of declining prognosis, but so far she's defied all odds and has made remarkable progress in therapy over the past year, despite being diagnosed as on the autism spectrum.
During a trip to Cincinnati to see a world-renowned colorectal surgeon, Addison's mommy gave birth 10 weeks premature via emergency c-section to little Audrina Skye, who entered the world weighing just 3 pounds. Audrina did really well and her family was optimistic by the time she left the NICU after 4 weeks that she was in perfect health. However, after 8 days at home, Audrina began turning blue - her family learned she was unable to maintain her oxygen by herself and needed to be on oxygen. They sent her home with a special monitor to wake up mommy and daddy when she was having a hard time. Soon after, she began showing scary similaraties to her big sister - vomiting, not able to stool, becoming failure to thrive.
Over the next 7 months, Audrina's condition would continue to deteriorate, and she would go on to be diagnosed with Reflux, Central Apnea, Hypoventilation Syndrome, Supraventricular Tachycardia, Cardiac Dysfunction, Jaundice, Chronic Anemia, Hypotonia, Failure to Thrive, Severe Dysmotility, Metabolic Acidosis, Moderate-to-Severe Dysphagia, Abnormal Hemoglobin Variant, Kidney Issues, and Dysautonomia. She is currently recovering from surgery to place a long-term feeding tube. On of the most difficult parts of the girls condition is that for a reason that is still unclear, the girls are unable to thrive on anything but a special pre-digested formula. So they are able to have NO food or drinks that are not made from this formula. This is extremely difficult for a child who wants to eat and remembers eating normal food. The girls also suffer from an extreme sense of hunger and have no sense of being full - they have spent most of their lives crying for more food. Until they discovered the diet problem, Addison would frequently eat until she threw up, often eating more than 1300 calories a day and still not growing.
Addison and Audrina have made appearances in almost every major children's hospital in the midwest, but continue to mystify their many doctors. Testing so far has yielded some clues, and the family will be traveling to Georgia in October to seek another opinion from a leader in the field of difficult to diagnose disorders. Recently, the Chasing Zebras Fund was established - a fundriaser to help out the family with the many costs of raising not one, but two children with special needs.
Please join us in our prayers, tears, and triumphs as we continue seeking answers for these sweet girls. We are on facebook at https://www.facebook.com/chasingzebrasblog. If you are able to donate to the Chasing Zebras Fund, you can do so at http://gogetfunding.com/project/chasing-zebras-fund
Ecclesiastes 3:1 says, "To everything there is a season, a time for every purpose under heaven." We know one day the answer will be revealed to us and we hope it is very soon.
Thank you for your support!
