Monday, October 5, 2009

A Lover AND A Fighter

Our little man, Lawson, continues to win his fight against a series of small health battles since his birth. Below is an update on his latest condition we recently provided to our close family and friends, who remain the most amazing support system any family could wish for. Each day, we count our blessings for all of the incredible people who make this journey more tolerable, who continue to provide perspective and shine rays of hope when it seems there are none. We love you!

'Evening family and friends,

Thank you for all of your love and support as we continue to work through the challenges of Lawson's diagnosis of his "rash". After another morning at the pediatrician, we were immediately transferred to Children's Mercy dermatology and discovered the following:

Anticipated diagnosis: It is almost 99% certain that Lawson's diagnosis will be Incontinentia Pegmenti; a general overview can be found here:; keep in mind this is just one site and prob not the best reference. We are very relieved to know it's not herpetic as that would require extended hospital time. Note: staph has now been ruled out as his condition.

Best case scenario: Lawson will go through the general stages of the condition for the remainder of his life with really only physical indicators. They will remain blisters like they are now for several months, then turn to brown streaks on his skin that will remain until he is an adolescent. It is not anticipated that will reach his face. In his teens, the streaks will lighten greatly and be a fine white. In white people, they will barely be noticeable. Most likely these marks will remain on his extremeties, but there is potentially for them to migrate anywhere on his body.

Worst case scenario: Lawson could experience some delays in development, eye and teeth troubles. Only in 30% of cases (and mostly female) do severe long-term affects occur such as seizures, neurological issues, etc. He will be closely monitored over the years via the amazing doctors at Children's Mercy.

This condition is RARE: This condition is almost NEVER found in males (less than 3% nationally); most males do not make it through pregnancy and survive this condition. What a blessing that Lawson is a fighter and made it through! In general, very few of these cases are seen in pediatric hospitals annually. It is expected that Lawson will be a great study for clinicians to review into the future, particularly given his anticipated strong outcome. His cells that have been affected are mosaic..meaning that only some are affected.

How it came about: this is a genetic condition, though not passed from Mike and I or our family, etc. Rather, it is a mutation of one of Lawson's genes. Mike and I will not have to worry if/when we have another child, rather Lawson will have to be concerned with this when he goes to start a family. Particularly, there will be more than a 50% chance that if he has a girl that she too will have the condition.

What we do now: life as usual with frequent doctor appointments to monitor growth and development; a list of indicators to watch for over his life will be our priority along with our clinicians

Final word: Lawson's biopsy results to confirm this will be available in 7 to 10 days. Our little man is exhausted as he's been poked and prodded almost his entire life until now. We are happy that he doesn't have to go back for another 13 days!!!

Again, thank you for all of your calls, texts and love. We are so blessed to be surrounded by such an incredible support system. Most days, we're not sure how we'd get through without you all!!!

Mom and Dad are exhausted but doing well. It's nice to finally have some information and cut back on meds and come to peace a bit at a time with what is going on. We are constantly amazed at how parents with terminally ill or very sick children cope - what a miraculous thing.

On a lighter note, this condition isn't getting the man down - he's still as fiesty as ever in the middle of the night, eating like a little piggy, and working on giving his Mommy and Daddy his first smile. What a champ! He is amazing and unconditionally loveable :) We'll be sure to send some more pics soon!

Meg, Mike and Lawson

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