This post is dedicated to one of the cutest kids I’ve never met but would like to – Louis.
“Louis (French pronunciation: “loo-ee”) was born in 2006, and on the following day 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 two years, several misdiagnoses, and many long nights, Louis was diagnosed with Mastocytosis, specifically Urticaria Pigmentosa, which is Mastocytosis in the skin and digestive track.
Mastocytosis is a group of rare disorders of both children and adults caused by the presence of too many mast cells (mastocytes) and CD34+ mast cell precursors in a person’s body which could be life threatening and for which there is no known cure.”
The above was the first entry into Louis’ CaringBridge page. He will turn five this year, and, if you have read his Mom’s journal over these years, you would realize, this little guy has gone through a whole lot.
In addition to the elimination of things from his diet in order to pinpoint things his digestive tract didn’t handle well; the throwing up continues – although much reduced. The doctor visits, the probing, the just not feeling good. Also, because of the dietary tract issues, Louis is way behind in his growth for his age. He’s a real trooper. I have a huge amount of respect for any parent, like Theresa and her husband Peter, who have to deal day in and day out with long-term illness of a child. Much more, how frustrating it must be, when even those medically trained can’t quite be sure exactly what is wrong with your child.
What had inspired me to write a post about Louis came from the latest written by his mother, Theresa. I will let her tell her latest adventure as the Martin family tries to keep their lives as normal as possible:
A new HOPE
“We had a scare the other day. We were enjoying the great weather when Louis screamed “OW!” and gripped his face. I saw what looked like a wasp type thing fall to the ground. With a sense of focused calm I whisked him inside only to see his cheek swelling and the redness and hives spreading like a spider web. Would I have to use the epi-pen? Were we going to have to go to the ER?
I gave him a hefty dose of Benadryl and tried to put a cold compress on it, but Louis wouldn’t have it. Again I felt lost, hopeless, helpless…there must be something that can be done, my poor darling – poor little Louis…
Thankfully, the Benadryl worked very well. The swelling and hives went down. He did have a vomiting spell that night, first time in over a week, but we believe it was from the flare-up from the sting. Thank God that’s all it was. Because you know that is the biggest fear with mastocytosis: that he will have an allergy to something and then it be exponentially worse because of the disease and he’d go into anaphylactic shock. God is watching over him…
We are trying to pour our hearts more into God…or perhaps I should say allow Him to pour deeper into us. I asked Pete to find an uplifting movie of a Saint to bring home from the office, and he found one about Blessed John Paul II.
Every time I saw him in person, I wept. I don’t know why – I can’t explain it, but every time my eyes would well up. There was something about that man that radiated God’s love. The movie was done so well…his life is such an amazing witness…so many times during the film I cried too.
You know his main message: do not be afraid and open wide the doors to Christ; and every life is worthy of dignity, respect and love. I suppose this is true no matter what evil we face; be it communism, genocide, pornography, discrimination, abortion, our personal sins, etc…or disease. We cannot be afraid. God is greater than it all.
In light of all these happenings, we are taking a bold stance. We are going to pray to God to ask for Louis’ complete healing through Blessed John Paul II’s intercession and in hopes that JP II will be listed soon among His saints. We invite you to petition our Lord for Louis’ healing as well. Here is the prayer we will be saying daily. We would love to have you join us.”
O Blessed Trinity,
we thank You for having graced the Church with Pope John Paul II and for allowing the tenderness of Your Fatherly care, the glory of the cross of Christ, and the splendor of the Holy Spirit, to Shine through him.
Trusting fully in Your infinite mercy
and in the maternal intercession of Mary,
he has given us a living image of Jesus the Good Shepherd,
and has shown us that holiness
is the necessary measure of ordinary Christian life
and is the way of achieving eternal communion with You.
Grant us, by his intercession,
and according to Your will,
the graces we implore…
that Louis be completely restored to health!
hoping that he will soon be
numbered among Your Saints. Amen.
If you feel inclined, please join us in praying for healing for Louis through the intercession of Blessed John Paul II.
You can also leave some words of encouragement for Theresa and Peter in the comments, and these will be posted to their caring bridge page.
Another way you can help: Theresa’s brother-in-law, Paul Rose, will be running in the 2011 Chicago Marathon, with all pledges/donations going to help support on-going medical costs for Louis. You can sponsor Paul an amount per mile, or do a one-time donation. Just go to the Help Louis website, click on ‘Donate to Help Louis’.
I have known Theresa and Peter for about nine years. We met as students at the Angelicum Pontifical University – Rome. They are really wonderful people, working hard to raise their four boys. As a community of faith, maybe together, with the help of the intercession of Blessed John Paul II, we may be able to help them do that, just a little better.
God bless you!
Blessed John Paul II, pray for us.