Dear DIARY,

Dear Dr. Jackson

March 13

10 AM
My name is Elise Boone. Im in sixth grade at Furman Middle and I live in Furman,
South Carolina with my family. I should be on a bus right now, cause I play the
flute in the Furman Middle School Band and we were on our way to the towns
annual jazz fest. Theres only 234 people in Furman, so all the locals like to get
together a couple times out of the year and hang out. I like it cause usually all my
friends are there. I never get to see my friends anymore. With Momma being so
pregnant all the time, and Pap working everyday of the week, Ive kinda taken on
caring for her and the house. But instead of being on a bus, Im here at the
Hampton Regional Medical Center sitting in the waiting room eating vanilla wafers
from the vending machine. Its 10 AM and Momma is still in labor with the new
baby. Pap and I drove out here with her at midnight two nights ago when she woke
up wetting the bed. Pap started freaking out so we drove out here to keep the
baby safe. Pap keeps cursing under his breath about the hospital bills, though. No
lunches for me for a while after this kid comes out. The nurses are dressed in
pretty purple suites that make them look like they should smell like grape koolaid. The whole place smells good and is so clean! Theres not a single speck of dirt
on the floor. I guess this is a better place to be born than in the little house weve
got. Ive been--Sorry bout that. A nurse ran into the waiting room calling for Pap. Its
happening she said. Maybe Ill have a sibling soon. No one really knows if its a
boy or girl cause the doctors said its breech. Apparently, according to Pap, its
sitting wierd so you just cant see its stuff. Theres a public computer so Im
gonna go play some games.
11 AM
I have a brother! Its official. One of the purple nurses came and told me. Ma and
Pap are naming him Hogan Hogan Boone. That sounds so good! She told me
hes big and loud. But, she also told me hes special. Of course he is, I mean hes
a Boone. She said that he has a condition and that I cant go see him. Thats when
she sat by me with a sad face. She said he looks funny and kinda ugly. He has
Harley King Itch the Mosis (Harlequin Ichthyosis). It makes his skin crack and split
open so that he looks like he has fish scales. I said, So, he looks like a fish!
Great! But she kept the sad face. She brought me over to the computer I was
playing games on earlier and pulled up the condition on Google. She spelled it
really weird, too. There were a bunch of websites about it that Google found. Then
she started talking all sciency: (1) its a mutation on the ABCA12 gene on the 2nd
chromosome (I had to ask her how to spell these fancy words). It stops the making

of the protein that brings fat and moisture to your skin. (2) She explained it as a
fish not being in water, or not giving water to itself, so it dries up and its scales
crack and it starts bleeding. She said he was born like this and eventually his
scales will fall off. She said he looks like an Asian clown because his eyes and
mouth are stretched by his skin. Apparently he cant breathe very well, either,
because his skin is squishing his chest and lungs. I sat quietly listening to every
word she had to say. Im not a very smart kid, but I was interested in what my new
brother was like. She had to go and take care of Hogan a little while ago, so now
Im here at the computer researching Harley King Itch the Mosis (Harlequin
Ichthyosis) myself. I cant figure out how to spell--oh, got it! The pictures are
scary Oh my Gosh, Diary! The babies look like theyre hurting a lot! I know what
the nurse meant by saying fish scales. They look like theyre from a horror
movie (not like Ive ever seen one, but if I could imagine). I wonder how you
take care of someone like this. (3) Google says that the baby needs tubes in his
belly to give him vitamins and water. We also have to give him eye drops so his
eyes dont dry out. Something called Retinoids will help him shed his scales.
Ohh-- lotion. Google says to give him lots and lots of lotion so he doesnt dry out
too much. It says hes in a lot of pain like this. I dont want baby Hogan to be in a
lot of pain! Hes new to this world he doesnt deserve this. Hes a new fish that
deserves to be in water.
11:45 AM
Sorry about that. I started crying and a purple nurse came to take care of me. I
just dont want my new baby brother to suffer--hes got a whole life ahead of him
to spend with me. Ill be the sissy that makes him suffer and do my chores and my
laundry and my hair and makeup and hell be okay, right?
Im continuing my Google search about this thing thats hurting my brother. God!
Why are there these ugly monsters out there? (4) Um it says that it happens 1
in 300,000 births. Thats not very common good. Then I guess Hogan really is
special hes a 1 in 300,000. Thatll be a cool story to tell later in life. Will he live?
Will he live to see my band go to nationals one day? Will he live to tell his story?
(5) Google says Google says babies like Hogan dont live very often. It says
the the good doctors make the babies live. Oh, I hope Momma and Hogans doctor
is good. There was an experiment done that 56% of fish babies lived. Thats good,
right? Im so confused... Im sad, scared, and confused. All I know is that I wish I
could give him some of my water Id dry out for Hogan.
12 AM
Another purple nurse came to comfort me earlier. I told her how I was feeling:
alone since Pa was with Mamma. She sat with me and comforted me for a while

by telling me Hogan was going to be okay. She told me some more things about
his condition, too, but made sure that I was okay and not scared. I figured the
more I know about Hogan, the better I would feel. (6) She said his condition is the
most severe of this kind of monster. Harlequin Ichthyosis is the rarest and most
scary form of Ichthyosis. She also said that Hogan wont sweat. Apparently these
things called sweat glands wont be able to sweat because of how thick his skin
will be. She also said that I cant catch the monster hes got because he got it
from Ma and Pa. She said I didnt get it because Ma and Pas genes that had the
monster didnt get to me but they got to Hogan. Thats called autosomal
recessive traits. I asked the purple nurse if anyone has ever lived like this. I know
that Hogan has to have good doctors to live, but I wanted to know if he had a life
ahead of him. She stopped and got quiet for a moment but said that theres
actually a lady named Stephanie Turner that has this monster and is 22 years old!
She said that she even has a kid that doesnt have the fish condition. Did you
know that it actually means fish? Harley King Itch the Mosis (Harlequin Ichthyosis)
actually translates from Greek to mean fish. All this makes me feel a little
better, now, but I am still worried about Momma and Pa and Hogan since I havent
seen them for a couple hours.
1 PM
Pa just came out and comforted me. He said that Momma is scared and Hogan is
being taken care of. He said the doctors have to keep a close eye on him so that
he doesnt get an infection on his skin. Pa got all quiet and looked down at the
clean floor. He kept saying to himself that he felt guilty and that there were so
many things he and Ma couldve done. (7) Theres genetic testing being
developed that they couldve done, theres a couple of research foundations
(ACTION and SHHIRT) they could go and see I put on my big-girl pants and said
that Hogan was going to be okay. I told him what the purple nurse had told me
about Hogans monster trying to comfort him, and I told him about Stephanie
Turner. He just left, the purple nurse just came out in a hurry for Pa. She seemed
pretty frightened
1:30 PM
Hogan Hogan
Hogan is dead. The monster got him and he dried out. Pa came out into the
waiting room crying. He said Hogan got an infection. Hes gone.
Were now all in Mommas room. Shes is crying, too in her bed. Im leaning on her
shoulder with Pa on the other side. Were a crying heap if only we had Hogan for
us to hold together. I never got to see him, I never got to meet him, I never got to

promise him I would be the best big sister ever, I never got to play my flute to get
him to sleep, I never got to hug him and feel his special skin on mine.
Dr. Jackson, I know I dont deserve your help. I am not a smart girl, and my
parents dont have the money to do anything for you in return. But I ask that you
take some step to give other innocent children like Hogan the chance to live the
chance to be in the water. This diary entry is the most recorded information we
have of Hogans short life. I ask that you take what you can from it to make water
for the young fish that have the monster.
Please stop the monster.
Sincerely,
Elise and Hogan Boone