raebates
Staff member
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I received this information from two friends. One is a cousin to the little boy's mom, so I know it's accurate. Please keep the family in prayer. Thanks.
Dear Friends,
Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus. --I Thessalonians 5:16-18
Some of you have heard what is happening in our family, but others may not know, so we want to start at the beginning:
Elijah was diagnosed Tuesday with a rare genetic disorder (affecting about 20,000 people globally) called X-ALD (adrenoleukodystrophy). Travis, Ronda's brother, discovered he had this disease in January, so we have been researching to find out what that could mean for our children. Apparently, Ronda is a carrier for this disease. We also found out that Cyrus does not have it.
ALD affects the body in different ways for different people--Travis started showing symptoms just a few years ago (around age 30) but Elijah could start showing symtoms at any time.
When our amazing doctor gave us the news of his diagnosis, she also said that we need to act immediately. If he would start to show symptoms, it would likely be around age 7. Once symptoms start, a child with ALD generally has 6 months-2 years to live.
Wednesday, we took Elijah in for an MRI of the brain to see if any abnormalities exist. If abnormalities showed up, we would have left for the University of Minnesota to have a bone marrow transplant. Praise God, his MRI results were normal.
Our next course of action, then, is to travel to Baltimore to be part of an ongoing study at Johns Hopkins at the Kennedy-Kreiger Institute. We have already found that Elijah is eligible and accepted for this study (only 100 will be accepted). Because he was able to lay still for 45 minutes and not be sedated during his MRI, he can get in to the study in December (instead of waiting until February). What a great kid!!!
In Baltimore, the study is concerning the affects of a supplement called Lorenzo's oil on boys with ALD combined with a low-fat diet. If you want more information concerning all of this you can go to United Leukodystrophy Foundation - You are Not Alone. It seems that the Lorenzo's Oil + diet may stop the onset of symptoms and can slow the progression of the disease. We are so thankful that this will not be a painful process--he has to just take this liquid orally every day and keep to a regimented diet. Also, we will be having monthly bloodwork done here and regular MRI's as well to be sure that his brain is not yet affected. We will only have to travel to Baltimore once a year. When they said he could be enrolled until age 13, it was such a hopeful statement! We can have hope in the Lord in all of this.
Elijah knows that he has a disease (which he is not excited about) that Uncle Travis also has. He handled the news very well. Just a few tears. He was a trooper during the MRI and had two prayer requests: 1. that God would take away this disease in just one second, 2. that he wouldn't have any pain. Please pray with us with faith like a child. Also, Elijah is concerned that somehow God didn't make him special. We have talked through this, but I'm sure questions will continue to arise. Pray for us to have wisdom as we talk to him and for his heart to be focused on Christ.
Through this process, we have felt numb, joyful, broken-hearted, and thankful for every moment with our children. We are very grateful for the Body of Christ. We feel so surrounded and encouraged. We will continue to minister to people, love people, and share Christ with people. Our prayer, in fact, is that God will use this to glorify Himself in the lives of those who come in contact with our family.
Cyrus (age 3) doesn't seem to understand what is going on. He has gone with us to the tests, and just wants to be with his brother. I'm so thankful for their love for one another.
Dear Friends,
Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus. --I Thessalonians 5:16-18
Some of you have heard what is happening in our family, but others may not know, so we want to start at the beginning:
Elijah was diagnosed Tuesday with a rare genetic disorder (affecting about 20,000 people globally) called X-ALD (adrenoleukodystrophy). Travis, Ronda's brother, discovered he had this disease in January, so we have been researching to find out what that could mean for our children. Apparently, Ronda is a carrier for this disease. We also found out that Cyrus does not have it.
ALD affects the body in different ways for different people--Travis started showing symptoms just a few years ago (around age 30) but Elijah could start showing symtoms at any time.
When our amazing doctor gave us the news of his diagnosis, she also said that we need to act immediately. If he would start to show symptoms, it would likely be around age 7. Once symptoms start, a child with ALD generally has 6 months-2 years to live.
Wednesday, we took Elijah in for an MRI of the brain to see if any abnormalities exist. If abnormalities showed up, we would have left for the University of Minnesota to have a bone marrow transplant. Praise God, his MRI results were normal.
Our next course of action, then, is to travel to Baltimore to be part of an ongoing study at Johns Hopkins at the Kennedy-Kreiger Institute. We have already found that Elijah is eligible and accepted for this study (only 100 will be accepted). Because he was able to lay still for 45 minutes and not be sedated during his MRI, he can get in to the study in December (instead of waiting until February). What a great kid!!!
In Baltimore, the study is concerning the affects of a supplement called Lorenzo's oil on boys with ALD combined with a low-fat diet. If you want more information concerning all of this you can go to United Leukodystrophy Foundation - You are Not Alone. It seems that the Lorenzo's Oil + diet may stop the onset of symptoms and can slow the progression of the disease. We are so thankful that this will not be a painful process--he has to just take this liquid orally every day and keep to a regimented diet. Also, we will be having monthly bloodwork done here and regular MRI's as well to be sure that his brain is not yet affected. We will only have to travel to Baltimore once a year. When they said he could be enrolled until age 13, it was such a hopeful statement! We can have hope in the Lord in all of this.
Elijah knows that he has a disease (which he is not excited about) that Uncle Travis also has. He handled the news very well. Just a few tears. He was a trooper during the MRI and had two prayer requests: 1. that God would take away this disease in just one second, 2. that he wouldn't have any pain. Please pray with us with faith like a child. Also, Elijah is concerned that somehow God didn't make him special. We have talked through this, but I'm sure questions will continue to arise. Pray for us to have wisdom as we talk to him and for his heart to be focused on Christ.
Through this process, we have felt numb, joyful, broken-hearted, and thankful for every moment with our children. We are very grateful for the Body of Christ. We feel so surrounded and encouraged. We will continue to minister to people, love people, and share Christ with people. Our prayer, in fact, is that God will use this to glorify Himself in the lives of those who come in contact with our family.
Cyrus (age 3) doesn't seem to understand what is going on. He has gone with us to the tests, and just wants to be with his brother. I'm so thankful for their love for one another.
