Natalie Grace Pfau

A beautiful, loving, and incredibly brave 8 year old girl who has had a hard time for many years, with the last year being exceptionally difficult. She rarely has the opportunity to partake in the “normal” 8 year old girl activities and misses the normalcy. With great days she’s able to be with her friends, unfortunately these are rare. Natalie has digestive issues that have taken us all over the east coast to seek the right treatment and improve her quality of life. This past year we have had numerous hospital stays for weeks at a time. She has had multiple surgeries , overcoming all of them with hope and optimism. Speaking with her, you would witness such strength and wisdom. Natalie is a figure that my husband and I try to follow. She is independent, strong, and optimistic. As most of you know, our family has dealt with a magnitude of out of state hospital visits the last year. As her parents, our job is to provide for our children and make sure they have what is always needed. Unfortunately after five years, help from family and friends, the resolve is not quite there.

We have a home healthcare nurse that started out coming everyday of the week to now coming only when I need her. We were required to do in-home infusions for 4 hours a day everyday. All this was to accomplish was keeping her out of pain and somewhat comfortable. We have had an overwhelming amount of doctor appointments, hospital admissions, prescriptions, and the multitude of medical supplies and equipment that are required with her condition. It quickly adds up.

We just had to travel to Cincinnati children’s hospital to have an extensive amount of testing done to hopefully yield a better picture as to what is causing this and a possible diagnosis. While there, they made discovery after discovery it seems. Something as parents we have advocated for years about getting answers for. She needed to have everything worked up very precisely. It was at Cincinnati our biggest fear was confirmed and a bit of extra discoveries were brought to our attention. One discovery was she had a delayed emptying result from her stomach, the treatment for that is Botox injections in her stomach that must be maintained. Secondly, she was diagnosed with Eosinophilic esophagitis AKA (EOE) disease. This also requires it to be monitored very closely by a doctor who treats this. Normally if she had just the EOE, it wouldn’t be that complicated to treat but with the added problems and other issues they discovered, the EOE needs to be followed very very closely. Thirdly, while in the OR they discovered an issue with her bladder. While consulting with the Dr. after surgery he said she needs to meet with Urologist ASAP. Lastly, once all of the motility studies were finished we got the results a couple days later. Her whole entire colon is paralyzed and is not responding to anything. For a whole entire year not one doctor we came in contact with could put their finger on why nothing was responding to treatment. Now finally we have an answer. Also, once we met with her Urologist we were told there is a link between neurogenic bowel and neurogenic bladder and that she needs to see neurosurgery urgently. With all this being said, the next phase is going to be incredibly hard. Her care is going to need the best physicians possible. We have an amazing urologist and neurosurgeon locally, but the doctor who has to follow her so closely is all the way in Cincinnati Ohio. He said it is time to give Natalie the best chance possible at overcoming this. Although her chances are very slim we have to put the best team on this case. She has just had spinal surgery to clip a portion of her cord. Now, The next step is to have a diversion surgery and bypass the entire colon and place a ileostomy bag for everything to drain into. She only has a year to hope and pray her colon will respond once they redo the motility study next year. If not, it’s time to agree the colon is never going to respond and head in the direction of a colon transplant. We are already strapped financially in every way possible and we need help now more than ever. Especially knowing that this next journey is just beginning and will be a life long problem.
We are asking for help in making sure we give our daughter what she needs and a fighting chance at overcoming all of this. We are a fire department family, the shift work life for a spouse is hard and many times my husband has to take off from work to help out with our other child that results in a loss of pay from part time work. Anything helps and we will forever be appreciative and grateful.

❤️The Pfau family


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Cayce Michelle Pfau 
Summerville, SC
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