I’m not really sure why Noah, our four year old, is wearing a helmet … although, it would probably be better for him if he wore one more often! I blogged about Noah’s biopsy here and here for those who need a recap of the buildup to the biopsy. We got the results last week but it’s taken me a while to blog about it – I think I’m still processing and dealing with a lot of disappointment and worry.
The explanation is that he has morphea scleroderma, an incredibly rare disorder that literally changes the skin on a cellular level, transforming it into something thicker and harder. By rare, only 5000-7000 kids will be diagnosed with forms of scleroderma this year; only something like 25 out of a million people (all ages) contract it. Very little is known about it, there is no cure, and it will get a lot worse before it gets better. How it has happened with others is that the skin will slowing transform (for him, most likely where it is red, meaning from above his eye, down his nose and into his nostril) into a thick, white, scar like skin before (maybe) changing back. This process will literally take years and years, which does have a lot of impact on children in particular who are not emotionally or psychologically prepared for this kind of issue – especially where it’s on his face and he rarely goes out in public without someone commenting on it – usually strangers! To say it’s disappointing to find out it’s a condition that doesn’t have a cure, will most certainly get worse before it gets better, and in the best case scenario will take years to heal (most likely leaving scars), would be an understatement.
Adding to the stress of it, though, is that it’s one of the two forms of scleroderma. He has the surface form, which in theory only impacts skin – but not much is known about it still. The other form, systematic scleromderma, does the same thickening and hardening transformation on the inside of the body – effectively shutting down organs and blood vessels, and it is always fatal. It can take twenty years to kill someone, but it always does because there is no cure. Very little is known about it as well – those earlier numbers I quoted include all forms of scleroderma, not just Noah’s. It’s a shock for us, though, because my grandmother died of the systematic scleroderma a few years ago. Because of her age (it normally strikes people my age, not children or elderly), it only took a few years to take her life, but the memories of it hitting her and her suffering are still very fresh for our family so hearing any kind of diagnosis that includes the word ‘scleroderma’ is scary – even though the doctors keep assuring us that people only get one or the other (not exactly accurate; about 1% of victims of scleroderma get both kinds … so the potential is there, but incredibly slim odds). It is not supposed to be hereditary (although it hasn’t been proven), but there is thought that there could be a genetic susceptibility that could be passed on. Noah’s recent heart arrhythmia diagnosis also has us worried because that can be a symptom of the systematic version.
All that being said, we’re going to get him to some specialists to hopefully rule out the more serious version for our own peace of mind. It’s not the answers we were hoping to get, and we haven’t really spoken about it with our kids – he hasn’t been diagnosed with what my grandma had, so we’re definitely not putting those thoughts into our kids’ minds. We will have to have the conversation with Noah that it’s going to take a while to heal, but he has a good attitude. And prayers for Noah and our peace of mind are definitely welcome!
Matthew McNutt 
Praying for Noah and your family.
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I cannot imagine what your family is going through…sending positive thoughts your way…
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You and your family are in my prayers.
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Matthew, I am praying for you and your family.
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Matt,
Noah and your entire family are in my prayers.
I also pray you are able to get all of your answers very quickly.
I know it is difficult to think this way at a time like this, but always remember, God will never bring to you, more than you (and Noah too) can handle.
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Praying for your family tonight.
God bless you
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Matt, I had an uncle who died of systematic scleroderma. He lived a very happy life for all butt the last two years of his life, so I can empathize with your family over the loss of your grandmother.
We will keep Noah and your family in our prayers.
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Matt and Heather, we will definatly be putting noah and your family in our prayers. It is so hard when something happens to our kids and we cant fix it. be strong!
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Praying for you and the family.
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Matt… I'm so sorry. First, we'll pray & believe that it will not be anything internal and that it'll resolved quickly! Though it's not the same, I lost my hair a few years back and know what it is to deal with looking "different." I would lie to say it'll be easy, but I know that you know God's good and He will sustain you all and get you through this. He is both our healer and sustainer. Like I said, I know you know this, but we all need reminding in the midst of it. How incredible that God in trusted you as Noah's parents?! His grace IS sufficient and you are equipped for EVERY good work. Praying for you guys.
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We are praying for Noah. Jesus touch Noah and heal him Lord!
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Thanks everyone – we really do appreciate it! Part of me feels like I'm over-concerned – after all, since he's been positively diagnosed with morphea scleroderma, the odds of him having the other type are so slim as to be almost impossible, but the memories of my grandma going through it are still really fresh to the whole family. Anyway, thanks for all the prayers!
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Hi Matthew,
I appreciate the update and explanations. We are joining all the others in prayer for Noah and your family.
Love you!
(Aunt) Patty
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Matthew and Heather,
I just saw this post and am so sorry. I wish I had known last night when I saw you at the dinner. My heart aches for all of you. You, Noah and all of your family will be in my prayers.
Brenda
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You are in my thoughts and in my heart I hope and pray that there is positive result for this and I hope that it will come soon. thank you for opening your heart to us and we are here for you 🙂
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Praying for you and the family.
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We are praying that God will do a miracle in Noah's life and heal him quickly. We are so sorry that you have to go through this but we know the Lord is with you and is in control of Noah's life. We will also pray for the power of the Holy Spirit to fill him with self-confidence and peace as he walks through this trial. Love, Arul and Zuli
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