We Receive and Early Christmas Gift
August 2, 2011 – The Christmas gift we didn’t count on: Today the kids and I met Michael for lunch and while he was on his way to meet us he got an e-mail from Dr. Emily Germain-Lee who is at Kennedy Krieger Institute (KKI) in Baltimore. She is Tristan’s endocrinologist. She is also one of the main researchers of Albright Hereditary Osteodystrophy (AHO), which encompasses Tristan’s endocrine and bone disorder, and includes his growth hormone (GH) issue. For those who have followed Tristan since his birth, you might remember that Tristan was tested this past year to see if he was insufficient in GH, but the tests came back that he was sufficient, and produces normal amounts of the hormone. Kids with AHO, however, can have sufficient GH and still not grow properly, and still need GH treatment. Because Tristan’s blood results came back as sufficient, our insurance will not cover any GH treatment, which costs about $35-$45,000/year until he stops growing. I prayed long and hard about this because Tristan needs the GH treatment, but not many people have that much extra money every year to pay for GH treatment. Without the GH treatment Tristan would probably only end up around five feet tall as a grown man, because the growth plates fuse prematurely in kids with AHO. Women can get away with being short, but for men society is not as kind. This has been a big stress on the back of my mind and one that really has hurt me from time to time as I thought about Tristan’s future and happiness. To date Tristan has NOT grown or gained significant weight in almost two and a half years. He wears the same clothes he wore last summer, and he wore the same clothes for the past two winters. This is great on the budget, but people have started to notice his small size. People say things. People do not realize what comes out of their mouths can really hurt another person experiencing something out of their control.
Well back to that e-mail from Dr. Germain-Lee, she worked the past several years to obtain money for a research study for kids who are sufficient with AHO. We prayed and waited and finally yesterday she was given the green light that the GH manufacturing company will provide the growth hormone at their expense for the children in her study. It will only be a matter of time before she has the GH drugs to give to kids like Tristan. When Michael told me I started to bawl in the restaurant where we ate, because there are no words to describe that moment other than it is better than a Christmas gift, better than winning the lottery, and better than nearly anything you could name! It will be awesome to watch Tristan finally grow. I feel like I can breathe a sigh of relief, because before today we were somehow going to figure out how to pay for the GH treatment on our own even if it meant I worked full-time simply to pay for it. Also, as Tristan’s mother, I hope someday he will meet a nice woman who will love him for who he is, and if he were so short I worried it would make finding a life partner more difficult. God is so good, and it is days like this that I KNOW why I LIVE IN MARYLAND. I really dislike living here, but I know HE has us here for a reason.
Sorry for my book, but this news is beyond beautiful, wonderful, I cannot thank my Jesus enough for his blessings. I have been a crying mess ever since, but it is tears of joy! Thank you for those who pray for our family and my little boy. Please keep them coming, because HE is listening.
We talked with Dr. Germain-Lee tonight and on the 26th of this month we are going for our first appointment. She will have Tristan do a fasting blood draw to get a baseline for all his blood levels. After that he goes up to radiology for baseline radiographs of his wrists, knees, and ankles. These radiographs will give a more accurate view of when the plates will fuse. All this information will then be put into her research cue. Tristan is going to be one of the first patients to start the GH because we live so close. We have another appointment September 16th and Dr. Germain-Lee cleared her entire patient schedule that day to spend it with Tristan and us to go over paperwork, to show us how to administer the GH drugs (it is given daily in a shot), and discuss the risks again, what to look for, etc. She hopes to have the GH on that day, and we will administer the first dose that day. Dr. Germain-Lee said there is a chance this might not work, because she has little data to support an effect yet. At this point I will leave it up to God, and I will know we did everything we possibly could as Tristan’s parents to help him grow and achieve success and a life of happiness.
Thank you for all the wonderful responses. Our GOD IS GOOD!