Al and Kathy had four beautiful kids – Leona, Alex, Shannon, and Micki (yes she’s called Michelle now but she’ll always be Micki to me). In the US the probability of having a child with cystic fibrosis (CF) is 1 in 3,000. CF isn’t even something on our radar when we are having a child because it’s so uncommon. But believe or not, 3 of their 4 children have CF. Shannon and Leona’s CF manifests itself with a lot of respiratory issues. In Micki, however, manifests with chronic pancreatitis. To make this story even worse than it is, their son, Alex, who was the only child without CF died in a motorcycle accident almost 12 years ago. I can’t even imagine one of these things much less all of it, but through it all they have always remained positive and still help others.
So why am I starting a Go Fund Me page? Their daughter, Micki, is having a major surgery today because of her chronic pancreatitis. Chronic pancreatitis is a rare manifestation of cystic fibrosis and is a genetic deformity which only occurs in 1–2% of patients with cystic fibrosis. Because of this she has been in excruciating pain for most of her life. Micki is 32 years old and married to her wonderful husband, Matt. She’s been in and out of the hospital since she was a teenager. She has tried to manage it with diet and different medications. A little over a year ago, however, she had to have a permanent feeding tube in order to bypass her pancreas because hers wasn’t allowing her body to absorb any nutrients. She wears her backpack with her everywhere she goes like a champ. But can you imagine having not eaten a bite of food or had a drink of anything for over a year? I sure can’t. But she does it all with a smile on her face. The feeding tube has helped her to gain some weight back and have more energy but has done nothing for the constant pain.
The University of Minnesota Health has given her hope for a more normal life though. It has the world’s largest total pancreatectomy and islet auto-transplant (TP-IAT) program in the world. A pancreatectomy is surgery to remove the pancreas. However, without a pancreas to produce insulin, which controls blood sugar, diabetes develops. To solve this problem, during our TP-IAT procedure, technicians isolate islet cells from the removed pancreas, and the surgeon puts them into the liver where they can continue to produce insulin. In some cases, this procedure can help the patient maintain normal blood sugar levels under all conditions, thus reducing any need for insulin and improving quality of life.
Here’s where Go Fund Me comes in to play. Her insurance will cover all but $60,000 of this procedure. Some insurance companies will cover this whole procedure but unfortunately her insurance will cover removal of the pancreas but not the transplant of the islets. Without the transplant of the islets, she will become a ‘brittle’ diabetic which is a condition marked by very quick shifts in blood sugar levels. They can easily swing from high to low and from low to high. It is extremely hard to regulate and shortens your life considerably. So, I don’t know about you but I’m really sick and tired of insurance dictating what we need instead of the doctors.
This wonderful couple did not want to ask for anyone’s help and don’t even know I’m doing this page but if anyone deserves it they do. They have gotten a second mortgage on their home and an additional personal loan to pay for this surgery out of their own pocket. I just want to help a family who has helped countless others by trying to help defer their cost of this surgery no matter what we can raise. Not only do they have the cost of the surgery, but they have to stay in Minnesota (quite a ways from their home in TN) for 6-8 weeks while she’s recovering and having checkups. Not only do they have the stress of the surgery but all this financial strain has got to be overwhelming.
So for the family that’s motto has been to “Pay if Forward” before that was even a thing, let’s pay it forward and help them in any small way we can.