About a boy
Category ald adrenoleukodystrophy
My 8 year old son, Matthew, has a rare genetic disease called adrenoleukodystrophy (ALD). Our local paper, The Lawrence Journal-World, did a story on him last spring that you can read about here: Matthew's story. You can read more about the disease here: Adrenoleukodystrophy.
In the LJWorld story it talks about how we were scheduled to visit Dr. Gerald Raymond at Kennedy Krieger Institute at Johns Hopkins Hospital in Baltimore. We did that last July and Matthew has been involved in the "Lorenzo's Oil" study since that time. You may recognize that quoted phrase because of an Oscar-nominated movie by the same name that came out in 1992. The movie is about a husband and wife who with a young boy with this disease and their efforts to help him. I'm told it is a gripping story but I can't bring myself to watch it because it hits too close to home.
Matt is doing very well on the Lorezo's Oil. The purpose of the oil and diet is to lower the concentration of very long chain fatty acids in his body. These are thought to contribute to the demyelination of his nerves. It has been quite a change for him and for us. He is allowed 19 grams of food fat per day. To put that in perspective, a single Snickers bar has 11 grams of fat. He has been quite a trooper about it though, and very self-regulating. He takes 44 ml of Lorenzo's Oil per day and 9 ml of walnut oil. These he quickly gulps down without complaint. Again, he has an amazing attitude.
The reason I am writing is that we received a letter from Dr. Raymond last month stating that the study is losing funding. We are doing what we can. I'd like to invite you to contribute as well. Any gift would be much appreciated, but if you are able, please consider giving monthly. If any of you have influence over institutional grants or charitable gifts, please consider this cause. This disease doesn't receive much press because it is rare, but it mainly affects young boys. It can take various forms, the most serious being the childhood cerebral form. We hope and pray that Matthew's ALD doesn't manifest itself this way and participating in the study is our way of fighting the disease. To contribute by mail, make checks payable to Kennedy Krieger Foundation and in the memo write ALD Research. The mailing address is Kennedy Krieger Foundation, 707 N Broadway, Baltimore, MD 21205-9851. You may also contribute via the website at Kennedy Krieger. On the donation page, be sure to select "Other" in the "Fund Designation" field and then enter "ALD Research" below.
Thanks for listening to my story. I want to leave you with the words of Psalm 139. I think it applies in a special way to Matthew.
13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My 8 year old son, Matthew, has a rare genetic disease called adrenoleukodystrophy (ALD). Our local paper, The Lawrence Journal-World, did a story on him last spring that you can read about here: Matthew's story. You can read more about the disease here: Adrenoleukodystrophy.
In the LJWorld story it talks about how we were scheduled to visit Dr. Gerald Raymond at Kennedy Krieger Institute at Johns Hopkins Hospital in Baltimore. We did that last July and Matthew has been involved in the "Lorenzo's Oil" study since that time. You may recognize that quoted phrase because of an Oscar-nominated movie by the same name that came out in 1992. The movie is about a husband and wife who with a young boy with this disease and their efforts to help him. I'm told it is a gripping story but I can't bring myself to watch it because it hits too close to home.
Matt is doing very well on the Lorezo's Oil. The purpose of the oil and diet is to lower the concentration of very long chain fatty acids in his body. These are thought to contribute to the demyelination of his nerves. It has been quite a change for him and for us. He is allowed 19 grams of food fat per day. To put that in perspective, a single Snickers bar has 11 grams of fat. He has been quite a trooper about it though, and very self-regulating. He takes 44 ml of Lorenzo's Oil per day and 9 ml of walnut oil. These he quickly gulps down without complaint. Again, he has an amazing attitude.
The reason I am writing is that we received a letter from Dr. Raymond last month stating that the study is losing funding. We are doing what we can. I'd like to invite you to contribute as well. Any gift would be much appreciated, but if you are able, please consider giving monthly. If any of you have influence over institutional grants or charitable gifts, please consider this cause. This disease doesn't receive much press because it is rare, but it mainly affects young boys. It can take various forms, the most serious being the childhood cerebral form. We hope and pray that Matthew's ALD doesn't manifest itself this way and participating in the study is our way of fighting the disease. To contribute by mail, make checks payable to Kennedy Krieger Foundation and in the memo write ALD Research. The mailing address is Kennedy Krieger Foundation, 707 N Broadway, Baltimore, MD 21205-9851. You may also contribute via the website at Kennedy Krieger. On the donation page, be sure to select "Other" in the "Fund Designation" field and then enter "ALD Research" below.
Thanks for listening to my story. I want to leave you with the words of Psalm 139. I think it applies in a special way to Matthew.
13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
No, not really. I would
like to take some time to clarify though. In my session, I said that
it didn't matter if you checked the "Run as web user" box on
the agent because it always ran as the signer of the agent anyway. Andreas
said to check the box so that it would run with the user's credentials.
Those two positions seem mutually exclusive, but let me explain the
differences. All of my examples were written in LotusScript and his
were written in Java. Because his were written in Java, he could
access the web user session and retrieve the token and subsequently run
with the web users credentials. That is not the case for LotusScript
agents. However, in both languages the EffectiveUserName value is
the name of the agent signer. That is different than the normal way
that "Run as web user" agents work. Another difference
is that for normal agents, the web user needs some access to the database
containing the agent. Not the case here. In my example database,
both Default and Anonymous are set to No Access and yet the hook agents
run.
