Luca was brought into our family 3 years ago. He has been in and out of hospitals from the moment he was born. He has been through more in the last 3 short years than most of us have in our entire lifetime. This has been a rough journey for everyone involved. From medical expenses, to having to take time off work, to watching him go through treatment after treatment. Luca’s father wrote a short summary to give everyone an idea of his situation. Please, if you feel led to help out this family, anything will help.
Anyone who has met my son Luca knows that despite his medical circumstances he always tries to wear a smile. And by his effort, my wife and I can’t help but smile when we’re around him, no matter what new trial we might be going through.
As it turns out, we may soon be facing an entirely new trial. To keep a very long story short, it’s easiest to explain Luca’s medical situation as somewhat of a mystery. If you want to know all the gritty details, keep reading. Or you can skip ahead to the reason for this fundraiser under The Trip.
While in the womb, Luca had complications with the development of his gut and intestines. He now has trouble absorbing certain nutrients in food due to a condition called Protein-losing Enteropathy (PLE). The body relies on many different kinds of proteins to function and grow correctly; everything from Vitamin D to complex proteins that make up the body’s immune system.
To put it even more simply, Luca’s intestines are rejecting the absorption of proteins vital to his health. We do not have a reliable list as to which proteins are being rejected because we keep discovering more. For instance, our first PLE discovery was that he was not absorbing lactose, a protein found in milk. Since then Luca has also had problems absorbing other proteins.
Our most recent discovery is what is prompting us to take more drastic action. After being admitted to the hospital for pneumonia in September, blood tests found only trace amounts of a certain protein called an Immunoglobulin (IG). In very unscientific terms, these IG proteins are meant to float around in our bloodstream and are the “first responders” whenever a virus is found in our body. These IG are sent by the body to fight off infections and illness. The IG proteins develop a kind of muscle memory the more viruses they fight off and that allows the immune system to become more effective over time. Luca’s body, however, is losing these vital proteins in a way doctors cannot fully explain. Your body produces a certain amount of IG on its own. You cannot technically eat any food that will give you more of them so they are not easily replaced. Yet, Luca’s body is losing them, likely through his stool. Without enough IG proteins in your body it can very easy to get sick and it can turn the mildest virus into something deadly.
Luckily, we have been able to receive IG transfusions at the hospital on a bi-weekly basis to help keep his IG levels up, but he is still losing them faster than we can give them. It is likely that PLE is also responsible for other conditions he now has, such as Celiacs Disease, Secondary Lactose Intolerance, and a rare condition called Congenial Sucrase-Isomaltase Deficiency. So the primary goal in this step of our journey is to isolate the IG losing problem and hopefully find a long term solution to PLE. The problem is that our Gastroenterologist has never seen a case like Luca’s before. His condition is already rare and the doctor’s that work with him have in a sense exhausted all relevant options.
This is why we have been referred to Texas Children’s Hospital in Houston. They apparently have one of the top gastroenterology teams in the country and our hope is that meeting with them will yield new solutions to Luca’s condition. We have a scheduled consultation and appointment with their team in Houston on December 21, 2017.
Unfortunately, the trip down there is expected to be an expensive one. This is partly because how long we will need to stay there depends on what the doctors decide once he’s been evaluated. We will likely be in Houston for at least three days. Fortunately, a good family friend has opened their home to us so we will likely not have hotel expenses. We have not yet decided whether we will travel by plane or by car. Some airlines will help cover the cost of flights if they are for medical reasons but I have yet to receive a solid answer from the hospital.
Our primary need for this fundraiser stems from the fact that Texas Children’s does not accept our insurance so we will be paying for the entire visit out of pocket. We have been given a ballpark for how much it will cost but that’s likely to increase. We will also be taking time off of work which will impact our income. The money we raise through this fundraiser will help us take this much-needed trip to hopefully find better answers than what we’ve been given so far and anything we raise that is not spent to support our trip will roll over into helping pay for other Luca-related medical expenses. For instance, as our new insurance plan activates in January, our deductible will reset and each year health insurance gets more expensive and the coverage gets worse. To put Luca’s medical costs into perspective, Luca’s special formula, his primary source for nutrients, costs over $600 a month and on top of that, this year alone has yielded debt in the six figures.
As a family, we appreciate every prayer, every message, and every kind word that has been sent our way. We understand fully that Christ is the only one who sustains us and Luca has made that more apparent than we could have imagined. He is the great miracle of our lives and we will do whatever we can to make him well.
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