Elijah Miller

UPDATE FEBRUARY 24, 2006

Hi, my name is Elijah Miller. I am 3 years old. I love trains, animals, legos, and pretending to be the crocodile hunter. I like to play games with my big brother, Dakota. My favorite movie is 101 Dalmatians. I like to watch duck hunting videos with my daddy, and I like for my mommy to read to me. I may look healthy, but the truth is I have a rare disease called Eosinophilic Gastroenteritis. That is a big word for a little guy like me. What that means is my body rejects proteins. That means I can not eat any food. I live on an elemental formula called Neocate One +. It is an expensive formula made up of amino-acids so my body can tolerate it. I am supposed to drink a lot of this formula, but it taste bad. My mommy and daddy stay after me all day to drink. At night my mommy gets up every 2 hours to sit by my bed and hold a bottle, so I will drink the formula in my sleep. I still do not get enough formula in me that my body requires to grow and gain weight. My doctor is a GI specialist in Ohio. He says I need to get a feeding tube, which would be surgically inserted through my skin and into my stomach. Mommy and Daddy are making plans to take me to Ohio soon.

When I get sick, I can not take medicines by mouth. The dyes and flavorings in the medicines make me sick. So when I'm sick with a cold, stuffy nose, or just not feeling well, my mommy holds me all night trying to make me feel better. My Mommy and Daddy ask for family and friends not to come around me when they are sick.

Living with this disease is not easy. When we go places such as church, the bank, shopping, or story time at the library, people try to give me candy and food. They don't know I want the food, but it'll make me sick. My Mommy and Daddy have to watch me very close, or I'll sneak some and get sick. I don't yet understand why other little kids get to eat and I don't, so most of the time we just stay home where I'll be safe.

I dream of going hunting with my daddy. He says I'm too little, so for now I just watch hunting videos. My family dreams of me being healed so I can someday have a birthday cake. Please pray for me to be healed and for my family who tends to me everyday.

Update February 14, 2003

Elijah had his PEG tube surgery January 30, 2003.  He did really well with the surgery.  He has adjusted well to having this tube hanging out of his stomach.   It amazes me to see him grab his IV pole and take off through the house. We are having some trouble getting his rate adjusted just right and it seems this will take some time to find what works for Elijah.  When he got out of the hospital he became sick.  We made our 2 day drive home with him sick and he was put in the hospital the next morning.  He was diagnosed with  RSV. He is now home again and doing regular breathing treatments.  I guess it just takes some time to get over RSV.  We will take Elijah back to Ohio in May and have his PEG tube changed to a Mic-Key button.  

Thank you for your prayers,

Kayla

The following is a link to Kayla's story as she has learned about this disease.

Update February 24, 2006

Elijah is 6 years old now. He is still tube fed because of a rare disease,
Eosinophilic Gastroenteritis, and he has been having stomach trouble.
He spent 2 weeks in the hospital back in September and has pretty much been sick on and off since
then. He spent a good month with stomach pain. His doctor sent him for an upper GI and we
found out he had many stomach ulcers. We tried him on Carafate and it made him really sick.
He has never been able to take any meds not even Tylenol. His pediatrician then contacted his GI doctor in
Cincinnati Ohio and he said to put him on prevacid solutab and that has seemed to help. Best of
all, he has tolerated the med.

Even on the med. he still has stomach pain, but it is not constant as it was before.
Last night he was up all night crying in pain. He took a long nap mid day and woke up
and the pain was gone.

Last May we took Elijah to Children's hospital in Arkansas and he was seen by a GI who wanted
to shave his stomach out due to thickening. He also said Elijah had a lot of nodules and polyps
in his colon. We did not return to Arkansas, because we felt the doctor did not have much
understanding of Elijah's disease. And we wanted a second opinion about the shaving out the stomach.
We also felt if this needed to be done we wanted his GI in Cincinnati to do it.

Jody started a new job in July and would not be able to get insurance until January so we knew
we could not go to Cincinnati to see his GI doctor until after the insurance kicked in.

Elijah now has appointments to see his GI doctor in Cincinnati Ohio. He has been to see this doctor
twice before (the first time we stayed 5 weeks and the second time we stayed 1 week).
This doctor has a team working on this disease and sees patients from all over the US and some
travel from outside the US to see him.

We are leaving February 26 for a 2 week stay and will return on March 11.
Elijah will have several appointments and surgery the first week. During the second week
he will see an allergist and then have patches put on for patch testing and those will be removed
March 10.

We would greatly appreciate everyone's prayers for us during this trip. Jody will not be going with
me and the kids, so we ask you pray for safety and also wisdom for this GI doctor while treating
Elijah and others with this disease. Your prayers is what has gotten us through the last 6 years.

Good news is Cincinnati had a press release about 2 weeks ago that they have narrowed this
disease down to a certain gene and now will begin working on a drug to suppress that gene.
I may not have worded that all just right, but it was an exciting article for us and gave us
hope.

Thank you for your prayers for our family.
Kayla Miller

Kayla's Testimony

Jody and Kayla Miller have been married 12 years. Jody works at Palmetto Addiction Recovery Center in Rayville. Kayla is a stay-at-home mom and home schools their oldest child. They have 2 children. Dakota is 10 and Elijah is 3. They are members of New Light Baptist Church on Prairie Rd. in Monroe.

If you would like to contact the family to let them know you are praying, you can.

If you would like to make a contribution, there is an account set up in Elijah's name at:

1420 Natchitoches St. • West Monroe, LA

387-4592

or

2831 Louisville Ave. • Monroe, LA

362-0015