- J
- A
Meet Eve. She is our sweet, 3 year old daughter who has been diagnosed with Failure to Thrive since 6 months old. She originally had a misdiagnosis of gastroparesis for 2 years. In November of 2014 her symptoms became worse. A severe onset of constipation and refusing to eat food became our daily struggle for the next year. This November we had an 11 day hospital stay at Childrens Hospital in LA, where they ran many tests and placed a NG tube in her nose. While in the hospital Eve had one of her very rare large seizures. I was so grateful it happened there because it brought in her Neurology team to start running more tests. Her doctor has ordered Genetic testing for her and some of the results have come back with mutations in Chromosome 7 and her X Chromosome. She has also been given a diagnosis so far of Psudo Obstruction Motility Disorder. Fancy words to say she does not eat or poop without a lot of intervention. We have more tests coming in Dec/Jan and the road is looking longer than we ever imagined. Although we have insurance there is a huge gap in what they cover and what she needs. Our insurance will only cover half of her at home medical equipment and tube food, which is leaving us with a hefty monthly payment. The doctor also wants to switch her to a higher calorie food that is $85- $300 per case (1 case= 5days). She is in need of a good stroller that can hold medical equipment (our 4th child umbrella stroller is not cutting it). She also needs a backpack retro fitted for her tube and pump so she can run and play like other 3 year olds. Eve is adjusting ok to her new life with her tube. She is very protective of it and understands that it is giving her food. She has had no food or water by mouth for 5 weeks, which is going to require an occupational therapist who is a feeding specialist in the future. We have been told this will be a long journery for Eve and are hoping to get established in our new normal. The funds requested here should cover all that we have accumulated to date and help cover her food and equipment through March/April if no surgeries or hospital stays occur. Maybe on Christmas Eve you could remember to pray for Eve. God has a big plan for her little body. Thank you for taking the time to support us in our journey.

