update to T&P for friend/Baby Madelyn

casirdms

Kathy called me crying this morning and said there was bad news. The MRI showed that she has either one of two types of leukodystrophy and gave her 1-5 years. The two types are Krabbe or Metachromatic but they are leaning towards Krabbe I believe. Which says most die before the age of 2. 

https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002178/

They will know for sure which one it is by the end of the week after more bloodwork. It is genetic so they are both carriers. They have a healthy 4 year daughter as well. A bone marrow transplant can be done with both diseases but it doesn't cure anything, only prolongs life for a few more months.

It's very sad and devastating and I can't imagine how her or her family feel right now. I know my heart is breaking for her and it's all I've been thinking about all day. Just four weeks ago they thought everything was fine. No clue that anything was wrong. Now their lives have come crashing down. And they have all these decisions to make.

Here is precious Madelyn today. They put the NG tube in since she can no longer swallow her formula.

 

 

 

Give your LO extra hugs & kisses tonight. You just don't know how blessed you are until something like this happens to people around you..

babydoll22308

looking at that sweet little girls picture makes me cry.  I cant even imagine the pain they are going through.  To look at your LO knowing you cant fix their sickness, i cant even imagine.  many thoughts and prayers are with their family.  No words will ever be comforting for her during this time.  Its just not fair.

Beckson

I'm so sorry- so heart breaking. Sending T & P!

bt3701

babydoll22308:

looking at that sweet little girls picture makes me cry.  I cant even imagine the pain they are going through.  To look at your LO knowing you cant fix their sickness, i cant even imagine.  many thoughts and prayers are with their family.  No words will ever be comforting for her during this time.  Its just not fair.

Exactly this. I was hoping that this was going to be a post with good news. I'm going to be thinking of them.  

LaceFace14

I just can't even imagine. I'm so sorry that they received such devastating news. They will be in my thoughts. She is a beautiful baby and I hope they are able to enjoy the time with her and that she's not too sick. 

CantWait2Be

I am so sorry they are going through this.  I can't even imagine.  I'm having a hard enough time with ds and his kidney/ureter surgery.  I hope they can make the best of the time they have left.  I missed an earlier post about how they came about thinking something was up?

amanda1680

Oh my gosh... I'm crying looking at those pictures of that sweet baby.  How terrible.  My heart breaks for them.  I will be thinking of them. 

rainstar752

This makes me so, so sad.  I have no idea how I would survive that kind of news.

bookkitten

I am so, so sorry your friend has recieved such unthinkable news about her beautiful little girl. I am in tears and I will definitely be praying for all of them, that they can have peace and comfort in the time they are able to spend together.

ladybug122

That is heart breaking. I am so so sorry for your friend and her family. 

Birdies08

I'm so sorry to hear the devastating news about their sweet, beautiful baby. My heart goes out to them. I can't even imagine.

aztoid2006

amanda1680:

Oh my gosh... I'm crying looking at those pictures of that sweet baby.  How terrible.  My heart breaks for them.  I will be thinking of them. 

T & P

mrsmullins0500

I cannot imagine the heartbreak this family is going through. That poor little girl. This just makes me so sad. I will keep them in my t&p and tell DH to do the same. Please keep us updated.

lovebugkim

This is such sad news... My heart  goes out to your friend and their precious little girl. I can't stop the tears from welling up in my eyes just looking at her sweet smile. Many thoughts & prayers go out to them in hopes that this is not final. 

Melissa2216

I can't stop crying.  Madelyn and her family will be in my prayers.  What a sweet, beautiful girl.

kaitylin

There is a blog I used to follow by a mom who's daughter was diagnosed with the same condition. Her story came to mind when you described your friends babies symptoms since it sounded exactly like this woman's baby but I didn't post it since I didn't want to scare you but I was so worried it was same condition and sounds like it is :-( I can't imagine the terrible time your friend must be having dealing with such bad news. If she wishes to read the blog for support and an understanding of what to expect the link is : https://www.healinganaya.blogspot.com/ There is also some groundbreaking research being done to help kids with this condition and so far there have been some optimistic outcomes. Make sure your friend does her own research since I've read that some hospitals are trying experimental treatments for it that seem to be helping... I will try to search for the article and will post it if I find it. How sad for your friend :-( what a devastating diagnosis.

cvl105

I'm so sad for this family! (

kmv68

What devastating news.  I am so very sorry your friend, her little one and their family has to go through this.  I will keep positive thoughts for tons of beautiful memories they will make together while she is here.

jellybeanjean

That is so sad.  I hate the harsh realities of this world, especially in regards to kids.  Sucks.

Praying that they are able to take her home soon and that they can enjoy every minute with her...looks like she's not in pain, and I hope it stays that way.  

milesc

I cried for an hour after wading this to DH last night... I was so upset I couldn't even comment. I am SO sorry... I simply can't imagine what that family is feeling. How devastating, poor beautiful baby girl. I will keep them in my thoughts and prayers.

JavaVino910

This sounds like any mother's worst nightmare. The pictures of sweet Madelyn just break my heart. Sending lots of T&P to the whole family.

AshleyPT

What a darling girl. This is so sad.

Sunidaze

I cannot even begin to imagine what your friend is going through and the challenges she and her family will be facing.  Definitely thoughts and prayers with them.

 

butterfly62682

babydoll22308:

looking at that sweet little girls picture makes me cry.  I cant even imagine the pain they are going through.  To look at your LO knowing you cant fix their sickness, i cant even imagine.  many thoughts and prayers are with their family.  No words will ever be comforting for her during this time.  Its just not fair.

You said exactly what I feel. 

The_Birds_04

That is devastating.  I feel so much sorrow for that poor family and sweet little girl.  Sometimes things just dont make sense.  My thoughts and prayers are with them to have strength. 

RobinSparkles81

What a heartbreaking situation...I can't help but cry.  This is every mother's biggest fear.  She's a beautiful little girl with a gorgeous smile...breaks my heart to think something so innocent and sweet...I can't even say it.  I'll be thinking of the whole family and hoping that during their time together, Madelyn isn't suffering 

Spartanmama722

I was so hoping for a good update when I opened this. I'm so incredibly sorry for this family that they have to go through this. No parent should ever have to face the prospect of losing a child. I'll keep them in my prayers.

ishka338

This just breaks my heart.  I am so sorry to hear this terrible news.  My T&Ps are with the family and baby Madelyn. 

kellymacc

absolutely heartbreaking - thoughts and prayers being sent their way.

RClaffee

bt3701:

babydoll22308:

looking at that sweet little girls picture makes me cry.  I cant even imagine the pain they are going through.  To look at your LO knowing you cant fix their sickness, i cant even imagine.  many thoughts and prayers are with their family.  No words will ever be comforting for her during this time.  Its just not fair.

Exactly this. I was hoping that this was going to be a post with good news. I'm going to be thinking of them.  

Me too.  

amberpro

I ugly cried while praying for her last night and I'm about to start crying again.  This precious baby girl and her family will stay in my prayers.  

jgengo0

keeping them in my T&P. so sorry to hear this.

ElatedMom2B

UGH - my heart just sinks for the poor family.  Totally in my T&P.  I just want to reach that baby through the computer and squeeze her tight...then hold onto mine and NEVER.EVER.LET.GO!

akayf

Oh, that is devestating news.    And she has an older sister too?   News like this breaks my heart.   Forget about coming to terms that your child has an incurable disease.   The thought of explaining something like this to my 4 year old...I can't even begin to imagine.

Your friends are in  my thoughts and prayers.   

megastar007

I am heartbroken for them... It's just not fair that they have to go through this

tarahnpaul

Oh her sweet little smile.  It's everyone's worse nightmare to find out something like this about your precious baby.  I can't imagine the pain they are feeling.

helenejr

I'll be praying for a miracle to bless sweet baby madelyn. No parent should have to endure the pain they are about to.