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.
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!
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.
Elizabeth and Caroline
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.
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.
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.
"No man stands so tall, as when he stoops to help a child." -- A. Lincoln