Friday, October 8, 2010

Cameron's Diagnoses

Yesterday Cody Cameron and I took a trip to Houston to speak with Cameron's doctors about his condition and all of his test results. Cameron has been vomiting more each day and seems to be uncomfortable. The doctor had most of the results in already thankfully.

Cameron's MRI showed much more damage than the last one from 6 months ago which tells the doctor that he does indeed have a progressive brain disease. His white matter is disappearing and his corpus callosum is very thin. The white matter is what insulates your brain and the corpus callosum is what connects the two hemispheres of the brain. You can read more about that here.

Dr. Foster told us that Cameron has a genetic disease called Leukodystrophy. It is fatal and there is no cure or treatment. There are 34 different kinds of Leukodystrophy so yesterday we began more testing to try and determine which one Cameron has. Dr. Foster also suggested that we consult a gastro doc soon because he fears that Cameron will be needing a feeding tube because of the vomiting and said it was inevitable.

The doctor thinks that Cameron most likely has Metachromatic Leukodystrophy or MLD:

Late Infantile MLD
After a period of apparently normal growth and development, skills such as walking and speech may begin to deteriorate. Once clinical symptoms become noticeable, they often appear to progress rapidly over a period of several months, with alternating periods of stabilization and decline. The child eventually becomes bedridden, unable to speak or feed independently. There may be seizures at this stage, which eventually disappear.  Contractures are common and apparently painful. The child is still able to smile and respond to parents at this stage, but eventually may become blind and largely unresponsive. Swallowing eventually becomes difficult and a feeding tube becomes necessary. With modern treatment and care, the child may survive for 5-10 years. Death generally occurs as the result of an infection such as pneumonia, as opposed to being a direct result of the MLD. Other symptoms that may be encountered are listed below, along with definitions of the medical terminology as necessary.
  • Developmental delay
  • Hypotonia: decreased muscle tone
  • Esotropia: cross-eyed
  • Psychomotor regression
  • Clumsiness
  • Spasticity: increased reflexes
  • Nystagmus: type of abnormal eye movement
  • Weakness
  • Decreased speech
  • Seizures
  • Ataxia: loss of the ability to coordinate muscular movement
  • Quadriplegia: paralysis from the neck down
  • Eventual absence of voluntary functions 
  • Worldwide, 1 in every 40,000 to 160,000 people have metachromatic leukodystrophy. In certain populations, the prevalence can be much higher.
We have heavy hearts as we are trying to cope with this news. Please pray for our family. I can't imagine life without our sweet little angel.


  1. My heart is oh so very heavy for you guys, and I am praying throughout all my days for lil' Cam, and your sweet family.

    Grace & Peace,

  2. Praying praying praying and passing the word on.

  3. I will be praying for your family and your precious little boy. I will be taking this to my church as well.

    Stopping by from Lacey In Love.

  4. Our thoughts and prayers are with you and your family. He looks like he is such a happy little fellow.


  5. I'm so sorry for this devastating news. I'll be along for the journey, with Cameron and your family in my heart and prayers.

  6. Oh Jessica, I am praying for you, your sweet little guy and your family. I feel like I know you, as I have been following your blog for a long while. Sending you love and a huge hug. xxoo, Ada-Marie

  7. I've added Cameron and you to my daily prayer list. I can't imagine the pain you are dealing with right now. Just know that a stranger is praying.

  8. Carin from Babycenter (zcamom)All my prayers are with you and your family. My girlfriend has 2 sons with MLD and received excellent care with the specialists at Duke Medical Center in NC which is renown for Leukodistrophy. Although I do not know you or your family you are in our prayers.

  9. I just wanted to mention as well that the boys received stem cell transplants from donors and went on anti rejection drugs at Duke which is one of the treatments (Not cures) for MLD. I believe the other treatment is bone marrow transplant (I believe) The doctors at Duke could give you more information. My girlfriend, her husband and her family were tested for the gene as well. I hope this is not too much information. I truly wish you and your family the best.

  10. Our Prayers are going up Daily for your beautiful son!May God be ever near to all of you!
    A close friend of charles and annabelle,

    Jackie Whittenburg

  11. Praying for a miracle. Miracles do happen everyday. May God give you the strength and knowledge you need during these next days, weeks, months and YEARS!!! Many blessings...

  12. May God give you the strength you need through this time. You and your family are in my daily Prayers. God Bless your beautiful son, watch over, protect and hold him tight. Beverly Shoaf

  13. I am a customer of Lake Air Pools. Cody was out a few hours on Thursday and told me about your little man's battle. I wish your family the very best. I know it must be hard. Cameron looks like a fighter. Both boys are precious.