Death Survey (120-04)

Elizabeth and Caroline DeLuca

Houston, Texas (Survey Date: July 2003)

Preface: This story did not come from an interview, and is not given in first person, as with the others. It came in the form of an email. So it is left in that form whenever possible, including associated comments by others. It is edited only for presentation here, not for content. As these people have opened up their lives so that others may benefit, please be respectful of their names and personal information.

A forward...

This is a long story, but I thought you might be interested to read how a cancer drug is helping to reverse, at least in part, lifelong damage to my sister Nancy's granddaughter, Caroline. She doesn't have cancer, by the way. The message comes from Caroline's mother, Elizabeth DeLuca, who has never stopped pushing for an answer to Caroline's problems in all of her 5-6 years of life. It seemed like they had tried every possible avenue, innovative therapy, whatever. And now, this!!

Caroline is going to be featured on "Good Morning America" on Thursday morning [July 10, 2003]. It comes on ABC at 7:00 am, in case you'd like to watch it while you're getting ready for work. I will be!

Jeanie

A forward by Nancy Taylor.

Latest news on my 5-1/2 yr old granddaughter!!!!

----- Original Message -----

From: Elizabeth DeLuca
To: Nancy Taylor
Sent: Tuesday, April 22, 2003 8:46 PM
Subject: Fw: What a month!!!! Yeah!!!

I have to start this email by saying that we had a terrible winter with poor Caroline. I have never seen someone go down so low so fast. By November she could not crawl and had lost the use of both hands. In total despair Anthony and I took her to Texas Children's Hospital and saw three neurologists in one week. We needed answers and we needed help. They had little to offer and we were resigned to losing Caroline. We talked about a DNR do not resuscitate order and filled out a directive to physicians order so that she would not be exposed to any painful treatments in the future. We even bought a plot at Glenwood Cemetery for the three of us. The one neurologist who has been with us from the beginning said that there were a couple of tests we could do, but that we basically had done them all. We did the initial blood tests he knew of, but the final test was a spinal tap and that went against our decision against painful treatment for her.

Anthony finally said we had to do it. The other neurologist pressured us to do it as well, because it would completely finish all available testing. In February we did the test and Caroline did so well, not a tear.

She now was completely mute and was scarily silent. In mid March I was shopping with Caroline in the middle of Ross Dress for Less (no less) when my cell phone rang. It was Dr. Miller, our primary neurologist. He said, "Mrs. DeLuca I have found something." I calmly said, "Slightly something, mildly something." I said this because that is all they every find, some tiny insignificant nothing that means nothing.

No, this is a significant finding, he answered. Enough of the quotes. Anyway I flipped out in the middle of Ross Dress for Less. Talking to him and telling Caroline at the same time, alarming all the shoppers who thought I was pitiful for talking to what looked like a completely out of it handicapped kid. I then asked if there was any treatment for her and he said yes!!!!! We started the new medicine the next day. It is a colon cancer drug called Leukovorin, and it is to help her get folic acid into her brain. Oh, that is the problem. No folic acid in the cerebral spinal fluid, apparently Caroline does not have enough binding protein to attach to the folic acid in her blood and take it to the brain. You need this folic acid because it helps the cells replicate and communicate etc. Kinda important.

To make this very long story a little shorter, I hope. We started the meds and a week later we noticed a little grin we had not seen in a while, then a few days later a little mischieviious giggle. Then balance returned and she stood alone for the first time ever. Then cruising furniture, then walking. Fast walking. She is even using her hands. The paralyzed hand is coming back slowly, but there is some major improvement. Needless to say, every day is like Christmas at the DeLuca house right now.

People see us walking down the street. We are up to 3 city blocks. and they stop their cars and say WOW! People at the little league field started crying. I'm not kidding. Our regular waitress at Avalon had to sit down when Caroline walked in the first time. I could go on and on with stories of total strangers stopping me and saying, "Hey isn't that the little girl in the purple wheelchair?" Yes, and then I give the biggest @$$^$#% eatin grin you ever saw. If you thought I was crazy before you should see me now.

We had a three hour doctor appointment last thurs. and I read a report from Europe about 5 children who deteriorated to the point that they could not sit or hold up their heads, two had gone blind, and their MRI's had moderate cerebellar atrophy, they had seizures all the time. A wonderful doctor by the name of Dr. Ramaekers put together their symptoms lumped them together and did a spinal tap. They had Low 5- methyltetrahydrofolate. He published his report in Sept. of 2002, our doctor read it and it sounded like a little girl he knew. A very special girl named, Caroline. Little did we know what a rare disorder it was.

Anyway I waited to shout the good news, I was so afraid if I talked about it it would go away. I can't keep the secret anymore because Caroline is out and about. There is little research in this disorder as of yet but it looks like the motor situation gets better and the mental retardation gets a little better. Quality of life goes through the roof. My dream is that through Caroline somehow they find the gene for this and that they can test babies that exhibit symptoms and then the treatment starts before the mental retardation and brain damage sets in. Needless to say I have already emailed Switzerland to Dr. Ramaekers (hope he reads english) and offerred him our blood samples if he needs them. I also sent him the picture of Caroline that I am sending to you. A picture of her standing alone in the garden for the first time ever. I thanked him for giving me back my Caroline. If you know anybody who does not believe in miracles, does not believe that God is so wonderful that our prayers are heard and that he answers them in his own way in his own time you have my permission to pass this email on or to tell my story.

Good night,

Elizabeth and Caroline

(an update)

I couldn't find any of the interim updates, but got this today. Beth said a few weeks ago that Caroline is signing for food (unheard of), and I saw her reach up and take Beth's hand - an act of will I have never witnessed from her. It's truly amazing, and wonderful.

Jeanie

Ok, to all my friends and family and those who have been added on to my friends and family by my friends and family. Thursday morning is the morning that Caroline DeLuca of medical fame will be featured on Good Morning America. For those that do not know, Caroline is back and better than ever. She is walking, eating (after an 18 month hiatus), almost feeding tube free. She said Hi yesterday to me and has even answered uh huh to me in the last two days. She has regained use of the two paralyzed hands and she is drinking from her sippee cup all by herself. If you want more info. tune in to Good Morning America on Thursday July 10'th. If the day changes they will email me Wed. afternoon and I will let you know. If you are not interested I am sorry for this email and you may delete me now. 3 2 1 Delete.

Sincerely, Elizabeth DeLuca Mother of Caroline
(my signature from my desperate internet days trying to find her disorder)

PS if you know someone who knows Caroline and I have accidentally forgotten them please pass this on. If you know someone who prayed for us please pass this on.

(another update)

Honoring her daughter, The Caroline School was founded in 2002 by Elizabeth DeLuca at The Center Serving Persons with Mental Retardation. Elizabeth DeLuca is an officer on The Center Board of Trustees.

"A man never stands so tall, as when he bends down to help someone in need." -- unknown

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