My leukemia's back.

[grandbayou]

Pot of mint or a mint of pot?

 

[Outpost JWB]

Oh blooie! So sorry for Caroline's loss, but thankful for the time she got to be Raul's mom. What a lucky little boy to have someone who cares that much. Thanks again for sharing another warm, tear jerking, wonderful life story.

 

[ronott1]

Pot of mint or a mint of pot?

Oh my!

I want to keep the mint as a potted plant so that it does not take over the yard.

I did not get to the plants last weekend but hope to this weekend.

 

[Suzie]

The bravest little boy I've ever met in my life passed away last night. Raul was special. He suffered from a disease called Epidermolysis Bullosa - the worst disease you've never heard of. We met Raul and his "mom" at the Ronald McDonald House in Denver and he's been a huge part of our lives ever since.

EB, or "The Butterfly Disease" is a condition where proteins and collagens that form the connective tissues between the layers of skin are missing. Do this. Rub skin on the back of your hand back and forth. See how it moves? In EB, that rubbing would form huge blisters. Those blisters pop (or have to be popped) and big open sores result. Some kids have it relatively mild. Some, like Raul, also have it in their internal organs and throat. Swallowing causes blisters. Hugging him when he hurts from one set of blisters causes another set where he was hugged. The medical community knows almost nothing about how to treat these kids. It's not unusual for a child to go into the hospital ER for something totally unrelated and come out days - or weeks later - after the damage and infections from something as simple as a bandaid on a blood test is finally under control. Parents have had DFS or Social Services called on them because the kids look like they have been burned. MRSA isn't something read about in newspapers - these kids live with it every day. Baths are done in bleach water. I hate this disease with every fiber of my being. Their toes and fingers fuse.

Caroline (his "Mom") first met Raul when she went over to Romania with a church group, providing aid and supplies to orphanages there. She wasn't very old - just 18. But she saw this baby, just a few months old, in an isolation crib because he couldn't be touched without it causing more wounds. He would lay there, his big brown eyes taking everything in, with all these open sores on his little face and body. She said she had to something, but she was just a teenager...what could she do?

She never forgot him. She went over every chance she got. And when she was 21 years old, when most young women are trying to find themselves and find Mr. Right, she was fighting the State Departments of 2 countries. Romania didn't allow adoption to the US anymore because of the epidemic of parents being so poverty stricken they were literally selling babies to orphanages, hoping American families would adopt them. But she got him over here on a hardship medical status, and proceeded to dedicate her life to seeing that he had the best medical care (limited at best) and learning how to care for him herself. He learned to talk, - not very well with the scarring and blisters in his little mouth, but we could understand him. He loved trucks and he went to pre-school. He thrived, he learned to laugh, and he learned to love. He got to be a little boy. He was being treated at Children's Hospital in Denver right after being admitted to the US, and that's when we met him. He was 2 years old then. What a cutie pie! I thought he had been the victim of an explosion or a burn accident, and Caroline told us about EB for the first time. It became my "cause".

Every other morning for 4 years she would get him up, adjust his feeding tube, inject his morphine and calming meds, then begin the tedious and painful process of changing his dressings. Like most kids with EB, debriding, ointments and creams and rebandaging were part of his routine. His legs, arms, hands and torso were bandaged. His hands and feet were bandaged. Bandage supplies can cost these families over $2000.00 a month, because most insurance doesn't cover what they consider "over the counter" items. The entire process takes a couple of excrutiating hours.

There is no cure for EB. There is no government funding or even any research to speak of. Since becoming involved with Debra (the organization that tries to help families as much as possible) we have lost so many Butterfly Babies it's heartbreaking. There are no treatments for EB because each type and subtype is so different from child to child. Besides, most doctors have never seen it and have no idea what to do for it. The recognized expert in EB is Dr. Toler. He's amazing. 8 months ago Raul and Caroline went to the Masonic Children's Hospital in Minneapolis, leaving everything behind back in Mass., where they had been living. And Raul became one of the few kids to have a bone marrow transplant in hopes of at least providing some relief from his EB. Oh, how he fought to live. His skin was beginning to improve but he just had too many other things going against him. After a valiant 8 months on chemo, dialysis, and toward the end, life support, he died last night in Caroline's arms.

I can't even convey how heartsick I am, and how much I'm going to miss having The Little Warrior in my life. I can't even image what Caroline is going through. Please, take a moment today and pray for Raul. For the first time in his 6 years, he isn't in more pain than most adults can handle. He's not being poked and prodded. And pray for his mom, and all of the people who loved this little guy. He was something special. EB is absolutely the worst disease you've never heard of....imagine a disease where the skin is as fragile as a butterfly's wings. Raul traded his Butterfly wings for Angel wings.

Sorry, didn't mean to totally hijack the thread and go on for so long. I wish you all could have met Raul and Caroline, though.

Blooie...thanks to you we have met Raul and Caroline...through your loving and frustrating concerns for them...Raul will live on in our hearts...as will Caroline....love is unconditional....

Tears fill my eyes for you and Caroline in the love and loss of such a great soul...

 

[Blooie]

Thank you guys for caring about the little guy we called The Little Warrior. I won't give up supporting Debra or the EB families I have come to know and love through them.

 

[lazy gardener]

Blooie, thanks for sharing the story of Raul and Debra. She is one special lady. May God shower her with comfort and blessings, and may he richly bless her for her sacrifice. I know that with her sacrifice, she reaped the greater blessing. For it's when we truly give and love sacrificially that we receive greater blessings than we give. She is one of God's blessed.

 

[Blooie]

Blooie, thanks for sharing the story of Raul and Debra. She is one special lady. May God shower her with comfort and blessings, and may he richly bless her for her sacrifice. I know that with her sacrifice, she reaped the greater blessing. For it's when we truly give and love sacrificially that we receive greater blessings than we give. She is one of God's blessed.

Thanks, LG.... I still can't get on the other page, so if you could let them know I am sure that Caroline and her family could use every one they can get right now. Actually Caroline was Raul's "mom" and Debra is the organization that supports EB research and provides so much for the victims of this awful disease. I know it looks like a lady's name. My mistake completely for not being clearer.

If anyone wants to do a Google search for My Romanian Butterfly, Caroline and Raul's story pops up. Awareness is the best thing we can all do. You will not believe what a cute little stinker he was, and how young Caroline was when she took on this huge responsibility. I can't even express how much I admire this young lady...and her parents and siblings for opening their hearts and doors to him. He had a childhood thanks to all of them. God will smile down on those He chose to take care of Raul forever.

 

[Outpost JWB]

Seen it on google. Just an amazing story. What a huge heart Caroline has. I will pray for her and her family's healing.

Ronott1, what kind of mint are you getting? Wish I would've known you wanted some. I have peppermint, orange mint, grapefruit mint, chocolate mint, Apple mint, lemon balm & bee balm. If you need some, let me know!

 

[LittleLakePhil]

Blooie my heart breaks.... Hard to finish reading through the tears.
When I was going through my transplant I had to go past the children's Ward to get some of my treatments.
It was the hardest thing to do.... I always felt guilty....I don't know why i was sick too.... But seeing sick kids is the worst thing.
Something about the unfairness of innocents suffering.
I have no other words... Nothing I can say to make it better. That story Like so many others just tugs right at my heart.
Dam it kids shouldn't have to suffer..... Freaking crying again....
Again....KIDS SHOULD NOT HAVE TO SUFFER

 

[sourland]

Kids should not have to suffer!