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 their immune system never shutting down until exhaustion and flooding their bodies 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: 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 are two drugs (Ilaris and Kineret) that Louis, and now his brothers as well, are taking through a an injection (Ilaris bimonthly and kineret biweekly) 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.  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. :-)  

There are constant medical costs accruing through the tests every three months (some are more expensive than others like: bone density scans, MRIs, LPs...). Anything you can give to help the family is greatly appreciated!! Though we mostly ask for your prayers!

Newest Update

Journal entry by Theresa Martin

As we were preparing for today’s appointment over the last few days, Peter had been praying there would be something fun going on at the hospital. (I thought “fat chance at that!” because they haven’t had any activities like that since covid.) But that didn’t stop Peter from praying for it!
We left early this morning around 6:30am. The boys had gathered their bags of books, toys, and dvds. They watch a movie on the ride, which helps distract from the tension and make the time go by faster.
While they watched Spiderman (the older one with Tobey Maguire, which for some reason they call “dorky Spider-Man”), I had one earbud in and was listening to an audiobook: “Mother Angelica: The Remarkable Story of a Nun, Her Nerve, & a Network of Miracles.” I always love listening to her story - such an inspiration to me! (& it gives me hope that God will help us even if it feels there is no way forward.)
When we arrived, we checked in at the main desk, got our highlighter yellow security nametag stickers and went upstairs. The first thing we noticed was a garland banner of superhero’s. Then as I’m checking them in, I realize the two receptionists both had super hero shirts. 
“Is it a superhero day?” I asked pointing to her shirt.
“Yep!” She smiled, “it is THE superhero day!” And she pointed to the sign with all the information and “Superhero Day” at the hospital.
Peter’s prayer was answered! How cool was that?? (You know who to ask to pray for you now, right?)
So, the boys read the flyer and on part of it, it said “lunch from Wingman Matt.” The boys had a good laugh at that, saying “who the heck is wingman Matt?” “They couldn’t get a real superhero so they made up one?” They went on and on about this awesome and awkward subpar superhero and what he might look like, making each other burst in fits of laughter. [more on this story later!]
They called us back for rheumatology and got the boys vitals and situated us in the room. Then after getting their info, they gave the boys each a gift baggie of things for “Superhero Day”!
Dr C came in and we had a great chat. Louis is doing wonderfully, so nothing will change with him. Emmanuel is almost doing wonderfully, but has had his moments of flare (even though he denies them). We won’t change anything this time, but will keep an eye on things.
Damian is the one we needed to discuss. At his injection sites, he is getting little hard bumps under the skin. And his skin is just riddled with them now. Dr C knew we were going to dermatology after this, but she suggested doing a combo of Ilaris & Kineret. Ilaris is the longer lasting med. Peter takes this one. However, the last time we tried to put the boys on it, they had all kinds of flares and breakthrough symptoms, and it turns out that it is not as effective crossing the blood brain barrier. The Kineret is the daily medication, which is effective give, but Damian’s poor skin is just not handling the twice daily injections well.
So, we add Ilaris once monthly, but keep him on the kineret daily, but just reduce it so it’s just one injection a day instead of two. At least he would still have the medication in his system, but trying to reduce the number of injections since his skin is so unhappy with it.
So that’s our plan going forward. 
Then we realized we were late for derm, so they called over to warn them and we rushed across the street. Thankfully the weather was beautiful today! And I promised Damian we’d check out the lobby activities for Superhero Day after this next appointment. 
Dermatology required Damian to put on a hospital gown. He almost panicked, but just took some deep breaths. 
“Putting this on brings back the terrible memories, mom.”
(He’s referring to last year when he had scarlet fever.)
“I know, baby. But this is different and it’s only for a little bit. I won’t let them keep you!” And I winked at him and he smiled.
When the team of two doctors finally came in, they were really wonderful. Full of energy, fast talking, had answers, gave us bags/ kits of what we needed and sent us on our way! (Damian was so happy she was so fast! I was just trying to keep up with what she was saying!)
She was very kind though - sympathetic, encouraging. It really felt like she cared that this had been difficult for us (for Damian and for me as mom). And she had answers! No, she did not think those spots were the beginning of abscesses. It is a reaction of the skin and the fatty cells right under the skin to being poked. It may be a reaction to a preservative in the medicine itself, but either way, we can treat it the same.
Once a week, Damian will take a bleach bath to rid the skin of lingering bacteria’s. (Because every injection is a risk of infection.) And they gave an extra antibacterial spray to use on the skin BEFORE the alcohol swab, before the injection. Then immediately afterwards, put a powerful cortisone cream on the skin to help it not react as much to the injection. Damian also needs to move around the injection site. 
Okay! We have a plan!! That feels good!
We left with a bag containing a huge jug of pure bleach and instructions. (I made Emmanuel carry it - it was heavy! And I was tired.)
We then had to get labs for all three - but not before Emmanuel and Damian were given balloons - because you know, Superhero Day!
They did great on the labs and we walked back to the lobby, and the kids were speaking about “Wingman Matt” again and wondering what his suit looked like.
Imagine their disappointment when it turned out that was just the name of the food service truck! Ha! So funny! (Check out the pic on that one!)
So, we entered, got a photo with Batman and did some crafts and had some snacks. Watched a weird unicorn costumed guy scare a little girl to death and a captain America guy try to get to his ringing phone while still in costume - that was entertaining!
We went to Davanni’s then for lunch (tradition!) and then we went to check out the “End Zone” so they could play some games and unwind. But End Zone was closed (probably because the staff was doing the Superhero Day).
As we were walking back, Damian looked into the windows of the little library and said, “there’s a freebie box guys!” So we went in and sure enough they had things left over from a golf tournament event. Free for the taking! They got little stuffed toys and baggies of crafts. And little finger puppets to bring home to siblings. Who doesn’t love free toys?
All in all, as we loaded back into the car, it was a happy day! We had a plan forward for Damian and the boys got all kinds of treats … and bonus - we were home around 4!
Thank you for listening and your prayers!
God bless you!
St John Paul II, pray for us!
Mother Angelica, pray for us!


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