Support Taylor's Fight Against Rare Condition MALS NF1

The past few years have been so crazy for the whole family medically. Now our attention is on Taylor, as most of you know Taylor has not been able to eat for about 4 years, and drinking more than a ounce at a time results in vomiting. Now we finally have a answer for some of it. After she went septic from the abdominal and shunt infection her neurosurgeon did lots of extra scans and tests to make sure abdomen was clear and new shunt was placed. During this test a condition called MALS was found.

Unfortunately MALS is a rare medical condition, that few doctors have ever heard of let know how to treat. There is one doctor in Seattle that does surgery to treat this condition, we have met with him and he has done extensive tests to confirm diagnosis. The problem is he is on sebatical until the end of year, he will be traveling across the U.S., and a few other countries to teach other vascular surgeons how to perform this surgery. So we were advised to go to one of the top surgeons in the U.S., part of this is because Taylor has lots of scar tissue from previous surgeries, and her neurological condition. The problem is Dr. Shu is in Connecticut and we live in Washington state.

There are two different ways this surgery is done, one is laparoscopic, and the other is open. Taylor does not qualify for laparoscopic, so she must have open surgery. The area operated on is abdominal aorta area including diaphragm. This is a major surgery and have been told recovery is around one year.

We are starting this go fund me to help pay to cover costs. I have already paid out of pocket costs for online appointment($500). The plan now is to be leaving in the first or second week of June, they are waiting on some heart tests. We are praying to get help with airfare and lodging, transportation to and from airport and to and from hospital and food expenses and any new medical equipment Taylor will need. We are expected to be spending 3 weeks in Connecticut. For her hospital stay there is plenty of room for me to stay with her at hospital. But we need to be there several days before surgery and two weeks after surgery, one week of that will be in hospital.

We will also need help with gas and medical expenses once home because things will get busy fast. Taylor and Riley are both starting new chemo when we get home, and I will be starting my second chemo. I will also be scheduled for surgery at Swedish in Seattle to remove a tumor in leg. So gas will be a big expense once we are home too. If you prefer not to use fund me Pay. Pal we can give email.

All money is going into a able account that is to be used exclusively for medical and living expenses. Thank you so much.