Since the plan for my upcoming travel had been confirmed I implemented a plan to lose weight, get in shape for hiking, and put things in good order so nothing would interfere with my trip. I was anxious to be away from everything and enjoy my working vacation.
The call that changed everything came in from my sister Patti on the morning of June 15th. Crying, she was at her wits end. She had just left the doctor’s office with Erika. The report was not good.
There are three types of Tyrosinemia: I, II and III, with Tyrosinemia I being the worst. The disease can be fatal if not treated appropriately. Tyrosinemia I is a metabolic disorder in which an enzyme critical for the breakdown of the amino acid tyrosine is missing. This allows abnormal amounts of tyrosine to accumulate in the body and act like a poison, which then causes damage, especially in the liver. People with this disease cannot have protein.
When Erika was diagnosed with this condition at the early age of five months old, the doctors informed Patti that life expectancy without a liver transplant was about eleven years. Unfortunately Erika was too young for this type of surgery. The other negative factor was that Erika was a “bleeder” and would not have a very good chance of surviving even if the surgery went well.
Fortunately, there was a drug from Sweden that was being used to treat Tyrosinemia I. It had not been approved by FDA and was very expensive. The doctors and my sister worked hard to have Erika approved for this treatment. There was no way our family could afford this drug at a cost of $36,000.00 for a month supply of pills.
Clearly God was with our family for my sister’s efforts paid off. Sweden approved Erika as a recipient. The medicine would be shipped monthly, overnight, from Sweden to my sister.
However this medicine also caused severe side affects. There was a great possibility the drug would affect Erika’s learning abilities, defining her as mentally handicapped. But my sister and Erika’s doctors felt that they had no other choice except to try this process in order to save Erika’s life.
Today, Erika is sixteen years old. My sister has had her hands full battling Medicare, doctors, social security, the school system, as well as Erika. Trying to hold down two jobs and making sure Erika eats right, has not been an easy task for Patti. In fact the situation has been overwhelming. Add to that the fact that Erika has fought severe peer pressure criticism at school about her condition, not the least of which concerns not eating meat. Not really understanding the severity of her problem Erika has given in on more than a few occasions. Besides giving in to the temptation to eat meat and junk food, she has succumbed to eating much more than her body needs.
At sixteen Erika weighed in at 195 lbs. Not only does this extreme overweight compromise her general health it also means that she must increase the amount of medication she takes in order to treat her disease. For every pound she gains, the dosage must also be increased. Erika now takes up to five pills a day at a cost of $76,000.00 a month just to pay for the medication. Thus the serious side effects also increase, resulting in more damage to her learning ability and mental condition.
The doctors informed my sister Patti that either she helped Erika reduce her weight within thirty days or they would be obligated to report her failure to care for her daughter as abuse, as the neglect of a terminally ill patient. I asked Patti to repeat what she had told me to make certain I understood this new development. My sister freaked out. She explained to me over and over again that she was working two jobs to make ends meet and simply could not be with her daughter twenty-four hours a day to make sure Erika ate the right thing.
I told Patti that I wasn’t surprised by her call. In fact, I explained, Erika had been on my mind for a couple of weeks. I felt as if God was thumping me on the head urging me to do something, and do something right away. But what? I told Patti I was trying to get ready for an important trip as well as getting my personal workload under control.
Yes, I agreed with Patti that something should have been done long ago. I apologized to her for not helping her deal with this over the years. I was sorry that I had simply stuck my head in the sand in hopes that Erika’s problem would fix itself. I lamely stated that I really had thought that Patti had a handle on things when in reality she did not. That was what God was trying to telling me: that my younger sister and her daughter needed me to help them.
In the moment following Patti’s phone call I made the conscious decision to put everything I was doing aside. I chose instead to go get Erika and make her come and spend four weeks with me. I needed to get to the bottom of Erika’s problem. I had to find out how to help her and my sister. I knew that four weeks was not a long time, but I figured it would be long enough for a serious start to addressing this difficult situation. Then I would still have a few weeks left to continue preparing for my trip.
On Sunday, June 19th I drove to Patti’s home to pick up her ailing daughter. Erika had no idea what was about to happen. I had warned the family not to mention one word of my plans to her. I entered Erika’s bedroom to find her cutting out more pictures of Justin Bieber. Photos and posters of the young singing sensation, her recent fantasy, already overloaded her walls.
Ericka has always respected me. In fact she has been a bit fearful of me, mainly because she knows that I mean what I say. And when I say something to those in my family, people sit up and take notice. As I stood in Erika’s bedroom doorway she looked up and saw me. Her eyes increased in size and her mouth fell open.
She knew something is up… [Part III]