Another Baby Madelyn update

casirdms · May 2012

The drs told them today (on Mother's Day of all days) that Maddie is in Stage 3 of Krabbe's Disease and has progressed too rapidly to have a bone marrow transplant. They have given her just a few months. Stage 3 is the last stage in which they also lose their sight and hearing (she's already lost being able to sit up, head control and losing arm control daily). The doctor told them to do anything they wanted to do with her ASAP while they still could so they are hoping to go to the beach in a couple weeks.

Her Birthday is July 21st and Kathy is hoping she will make it to that...

Thanks for continued T&P

cassoppea · May 2012

This is just heartbreaking. I'm so sorry to hear this. Sending thoughts and prayers to this family

chuicafina · May 2012

That makes me want to cry. I'll be thinking about them and hoping she makes it to her birthday. So unfair. Crying

tulipblossom · May 2012

That is just horrible. T&Ps for sure.

CantWait2Be · May 2012

Oh my. That is horrible. My heart breaks for them. I can't even imagine.

LowTalker23 · May 2012

So many thoughts and prayers go out to this sweet little girl and her family. My heart breaks for them.

Diver0214 · May 2012

Thoughts and Prayers to them. My heart just breaks for this family, I hope she makes it her her first birthday.

cvl105 · May 2012

Life is just so unfair sometimes. I'm so so sad for them. I can't imagine hearing news like this about my child. Crying

mrsmullins0500 · May 2012

cvl105:
Life is just so unfair sometimes. I'm so so sad for them. I can't imagine hearing news like this about my child.

agreed. It seems like it just came about so soon too. Did her doctors not suspect anything earlier? T&P for them I just cannot imagine what they are all going through.

casirdms · May 2012

janbc06:
cvl105:
Life is just so unfair sometimes. I'm so so sad for them. I can't imagine hearing news like this about my child.
agreed. It seems like it just came about so soon too. Did her doctors not suspect anything earlier? T&P for them I just cannot imagine what they are all going through.

No, her doctors didn't suspect anything until the week after Easter when she really started not being able to sit up anymore. It's so sad and scary how fast things can happen :

Magenta728 · May 2012

So so heartbreaking. Many thoughts and prayers for her and her family.

Melissa2216 · May 2012

Oh no. I am so, so sad for your friend. What heartbreaking news.

kaitylin · May 2012

This is so heartbreaking! I feel so badly for your friend. I hope they are able to take their daughter to the beach and celebrate with her on her birthday.

This is another reason I'm a huge advocate of newborn screening- they really need to add this test to the screening since they have shown some success in treating it with bone marrow/cord blood if it's caught on a newborn screening...

You can click this link to offer support to hopefully make it part of newborn screening:

https://www.huntershope.org/site/PageServer?pagename=unbs_takeaction

Hunters Hope is a great site for your friend to find information/support too... I hate that I keep hearing about babies suffering from this... it's horrible for anything to happen to your child but I can't imagine thinking your baby is perfectly healthy for 6 months and then in the blink of an eye everything changes...

nic5606 · May 2012

That is sooo horrible. Thoughts and prayers to that poor family.

JuneBugsMommy · May 2012

Oh no! I am so, so sad for that family!! I will continue to pray for them!

kmv68 · May 2012

So heartbreaking. The pain I feel as a mother, for this mother, baby and family is more than I can express in a post. Please tell your friend that she has lots of thoughts and prayers from women she doesn't know.