TRIPP. The Little Drummer Boy.

So there's this angel I know. 

He is 2. 

And he is so very sick. 

He was born with EB. and I have posted before about this disease. but I will do it again. and again. and if I had millions of dollars. I would give it to Dr. Tolar and his team. and the team of EB advocates. fighters. and families. 

ABOUT TRIPP. from his mom, Courtney:

Tripp was born on May 14, 2009. He was diagnosed with a rare genetic skin disease called "EB." Any type of friction on his skin or mucous membranes causes blisters. They told us he would not live to be a year old. Every day he amazes us by his strength. He is a fighter and with all he has been through, he has never given up. He is the strongest person I know. Tripp wakes up each morning with a smile on his face. Every day spent with him is a blessing. God has a special plan for him. I'm just blessed to be able to witness that plan.

Tripp when he was itty bitty

This disease is new to you? probably. 

It is the worst thing no one has heard of.

And yes, that is my opinion. but it is a strong opinion because EB is a terrible disease.

come on. he is so sweet. i love this picture.

I love a lot of babies with EB. and this one is a rockstar champion.

and today his mommy made a post that he is losing his battle. 

Wait. scratch that. He cant lose. 

so. he is winning.

he has been winning. 

Watch him

with his grandma.

go to his blog. and see this baby boy finish out like a champ.

and you will be encouraged by his mother. 

Who is an example of big, giant, amazing love. 

Tripp's link has been on the side bar of my blog for a while. Go visit it. 

and if you pray. 

Oh,

Pray for Tripp. 

to be comfortable. and at peace. 

with his momma

Children with EB are often in agony.
But sometimes you wouldn't know it.


You cannot imagine unless you live with EB daily.
and that includes EB sisters. brothers. moms. dads. grandmas. grandpas. aunts. uncles. and all those who care for these butterfly babies.

Taking care of those with EB is a major major task. wrapping.dressing.bathing.medicine.feeding.
These families are amazing.


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OK. now. best thing ever. watch him go.


This is an early video.

http://www.youtube.com/watch?v=sUof-liFKjY&feature=autoplay&list=UUR2YInctbWnNRXWqzUglnVA&lf=plcp&playnext=1


really. watch all these.

EB affects more than your skin. 

it affects your mouth, eyes, and other organs.

Over time, EB has affected Tripp's eyes.
Tripp has lost his sight. But he has serious rhythm.

http://www.youtube.com/watch?v=I0ZIGx48tMs&list=UUR2YInctbWnNRXWqzUglnVA&index=9&feature=plcp


http://www.youtube.com/watch?v=bGMsFx_S_hI&list=UUR2YInctbWnNRXWqzUglnVA&index=10&feature=plcp


http://www.youtube.com/watch?v=fq-DtZUrNeU&list=UUR2YInctbWnNRXWqzUglnVA&index=7&feature=plcp

I am so sad for Tripp. because he is hurting.
His play time is extremely short now. if he even has the energy to play at all.

But I am so encouraged by his life. and celebrate that.

You should see the amount of support and love surrounding his story.




His spirit is greater than his disease. 

He is an angel boy.

MAKE A DONATION TO CURE EB.

http://www.Debra.org/


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Since I wrote this draft post... Tripp died.

pray for his momma.
and his family.

and if you are moved to give to EB research. do it.

This print was inspired by Tripp.

and his family.


_____________________________

Exodus 9:16

But I have raised you up for this very purpose, that I might show you my power and that my name might be proclaimed in all the earth. 

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They have been doing everything right.
because they have been powered by love.



Visit Courtney's blog. The link is on the right side of the screen.
.learn about EB.
at least now you know a little more about it now.

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A great article about Tripp.

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