Louis’s Story

Site created on October 26, 2010

Hello!  Welcome to Louis' personal website!  (Though I think it will be more therapeutic for his mother than for him!)   UPDATE: Two of Louis' brothers and his father now have been positively confirmed to have the same exact disease, NOMID. It's been an on-going journey - but Louis opened the door to everyone else's healing. Thank you so much for your love, support and especially all your prayers!!! To get the background on Louis' disease, NOMID, severe level of CAPS, please read his background story. Click "read My Story"Louis (French pronunciation: "loo-ee") was born on October 24th of 2006, on the 25th his little body was covered with purple and red blotches that covered his whole body except his belly.The doctors were baffled and even took pictures to document this apparently very rare occurrence. The colors faded and he seemed fine, though they never fully discovered what caused it. His body did flare up in little hives pretty regularly, but he didn't seem to mind.  And except for a LOT of spitting up, seemed like a normal baby.  After all, what baby doesn't spit up? But it never stopped, even after he began eating solids.  To make a long story short, after 4 1/2 years, SEVERAL misdiagnoses, and many long nights, Louis was diagnosed with NOMID (Neo-natal Onset Multisystem Inflammatory Disorder) or severe CAPS.  When we began this, they thought he had Mastocytosis.  So, you'll see that reflected in the journals. I guess "journal" is the right word for it is a JOURNEY we have been on.  (Update: You will also now note that two of his little brothers have the EXACT SAME DISEASE. :-/ His father also has it.)   NOMID is a very rare disorder (odds of getting it are one in a million).  Guess our Louis, Emmanuel, Damian and their daddy are pretty special!  Basically the disease is his immune system never shutting down until exhaustion and flooding his little body with tons of inflammation.  Louis has headaches, pain, fever and vomiting which is neurologically based, from chronically raised intracranial pressure, that comes from chronic aseptic meningitis.  Without medication, he gets those night-time vomiting episodes 2-3 times a week.  Other daily symptoms: light sensitivity, great discomfort, very irritable, excessive thirst, painful joints (swelling, pain, inability to walk), short stature (he was not even on the growth charts for his age before medication - now is at 15%), hoarseness due to inflammation of the laryngeal cartilage.  And of course skin rashes which occur in 100% of the cases.  (you can see pictures in the photos section)(Update: baby Damian had the same symptoms as Louis, but we were able to catch it right away, which is great because we prevented the worst parts. And Emmanuel started showing signs at 2 years of age, just when it was getting worse, he was able to get the medication he needed.)   There are also many symptoms which are progressive so they will all have to be checked to watch the progress of them all.  Such as: potential physical and mental retardation (thankfully this has so far passed him by!), hearing loss, eye problems, liver and spleen issues.  (Another statistic: 20% of patients do not reach adulthood because of infections, vasculitis & amyloidosis.)  His hearing, eyes, liver, spleen and the neurological stuff will have to be tested continuously.      There is a drug (Kineret) that Louis, and now his brothers as well, were taking through a daily injection and for a while Louis was doing tremendously well with it, though his stability was compromised by the slightest illness. His brothers had shown great improvement as well, though every illness causes flare ups and constant evaluation.  They have since switched to a medication (also an injection) that lasts a little longer in their bodies. But there are drawbacks to this as well. It’s a daily evaluation - and apparently onset of puberty is now making it worse. Please keep praying!
Enjoy reading Louis' journey! He now shares it with his brothers, each of them are definitely one in a million! We love our Damian and Emmanuel! And we love our Louis! (Louis says he has healing power because if it weren't for him, his brothers would be really sick because they wouldn't know what it was. So he says he healed them, since through Louis they got medicine right away. :-) 

Newest Update

Journal entry by Theresa Martin

Hello friends!
We received good news this morning.  Our newest son, Charles Gabriel Martin, does NOT have the gene mutation that causes CAPS/NOMID.  So, he has been spared of the disease, and this is quite a gift to us!  Since there is a 50% chance of each new child having the mutation, and our last 2 babies did not have it, we almost expected little Charlie to have it.  That he does not have CAPS/NOMID is such a blessing of God’s merciful love! (I’ve included a few pics of him and his siblings for you to enjoy.)

Also, I know in these uncertain times, many people are asking for prayers, and many are letting you know how they are handling the Corona Virus pandemic.
  For our part, I have spoken with the boys’ speciality care doctor and established a plan of action for them.  Because they are on immune- suppressant medication, they are more susceptible to catching the virus.  In addition, Emmanuel has asthma.  This being added to taking immune suppressant meds makes Emmanuel most particularly susceptible.  The first priority is heightened quarantine to avoid catching the virus all together.  Our family will be taking no chances with this bug.
Secondly, if one of them does catch it, we must contact their Dr right away so we may design a specific course of action.  Depending on the severity of the illness weighted against the severity of the CAPS disease itself, she will adjust their meds on an individual basis.  I am NOT supposed to automatically stop their meds, but instead contact her ASAP.
God willing our heightened quarantine status can help us avoid ever having to make those decisions!  But it is reassuring for me to know we have a plan in place.  Just wanted to share that with you all, who have followed our journey, so you can be reassured as well. 
So, diligence in our quarantine is the name of the game for now.  Yet, little Charlie is a reminder that God is always with us and we have nothing to fear!  God loves each of us and you with an everlasting love and no virus nor even death can stand in the way of His love for you!
Pray, hope and do not worry!  God loves you and will be with us all!

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