Liam's Story


September 4th, 2000, the day my wife, Terry and I had been waiting for all our adult
lives had finally come. At about 7 P.M. Terry was commenting on how she had "cramps".
We decided it was time to go to the Hospital and just make sure everything was O.K.
thinking it was nothing more than "False Labor". BOY! were we wrong. After the doctor
asked what we were doing tonight, I said watching the football game and then eating
dinner. He said, "Well, Terry and I are having a baby. You can do that if you want"! At
10:59 P.M. we had a son! According to the doctors, everything was fine but what a set of
lungs! We named him William Charles Hammonds after my grandfather but called him
"Liam". And off we went to live "happily ever after".

Almost immediately we noticed something wasn't right. He would cry and fuss when he
wasn't being held. He wouldn't sleep all night, until we were holding him, and he was
having a hard time keeping his formula down. He wouldn't just "spit up" he would "SPIT
UP" launching a plume of formula about a foot away from him. He was gaining weight and
growing but just wouldn't keep the formula down. The doctor said this was "normal" in
some children and to wait 4 months to see if he'd  outgrow it. People kept giving us
suggestions, "Maybe he's allergic to that type of formula" and such. So, we tried almost
everything out there. For the first couple of feedings he was O.K., but it would happen
again. On Christmas night, while at my parents house, my folks got to see Liam do his
"spitting up". They said something is definitely wrong and to get him to the doctor
A.S.A.P. That week we had his monthly checkup and found that he had gone off the
growth chart. Weighing less than he should be, the doctor decided to check him into the
hospital for an "Acid Reflux Test". On January 2nd, 2001, we went to the hospital to
have him tested. Sure enough he had "Acid Reflux". They decided to put him on a drug
called Raglyn, and told us to watch for some "Allergic side effects" such as stiffness in
the arms and legs. After about 14 hours we saw those "side effects". His arms and leg were
stiff and he was irritable. We took him back to the hospital and they admitted him for
observation. So began the hole in our hearts.

Later that night, the Doctors told us that they wanted to transfer Liam to the University
of Chicago. They were afraid that he was having seizures and this hospital didn't have a
very big Pediatric Department that could handle such problems. Off we went by
ambulance. The following 4 days were pure Hell on our "Lil" guy. MRI's, EEG's, Spinal
Taps, evaluations, a stick here and a stick there. After all tests came back, the "Best of
the Best" were stumped, as they were all "normal". Then came the Gastrointronologist. He
wanted an "Acid Reflux" Test. So, they stuck a PH Probe through his nose into his
stomach, and waited 24 hours. When the results came back, the Doctors said he was 4 Xs
what a "normal" baby with Reflux should be. They claimed this "could" account for some
of the symptoms, and to wait and see. We also got the results of the Spinal Tap. The
levels of protein were higher than they should be. We were sent home with some
medication to help with the acid, and wait and see. The Geneticist was always in the
background. He would take it all in and make a few comments here and there, because
most of what he could offer wasn't good, and there was no sense in alarming us for no
reason. Some blood had been taken for tests and we would learn the results soon.

A month went by, with the help of the University, we had Liam in Physical Therapy, and
Occupational Therapy to try to help him regain some of the functions that he used to
have before the Reflux got so bad. He also started having problems with not being able to
clear his throat from mucus. Terry and I were almost sure that's what all this was. His
little belly and throat were just to sore, and he wasn't a "Happy Camper"! In March we
contacted the Gastrointronologist. Liam was having a real hard time drinking a bottle, so
we were feeding him more cereal, and that wasn't coming easy to him either. We were
setup for a "Suck, Swallow, Breathe" Study. This too would mean another hospital stay.
The first day they did the study and weren't happy with the results.

The results of the other blood tests had come back and all were "Normal" except.............
the test for Krabbes' was "screwed up". After a few adjectives from me, the Geneticist
assured us that they had enough blood for another test and we'd get the results back in a
week or so. In the mean time, Terry and I learned how insert a NG Tube through the nose
into the stomach so Liam could get his "Grub"! We were to go back down for another
S.S.B. Study the next day. The following morning, March 15th, as we were getting ready
to go down for the test, the Geneticist walked in and asked if we would wait for the study.

I asked if the results came back for the Krabbe test and he said, "Yes". I asked if there
was a reason for Liam to go through another Study. He said, "I don't think so". We had
our answer. Liam had Krabbe disease and we were going to loose our "Lil" Man. Liam had
made a lot of friends in the hospital, since this was the first case of Krabbe disease there,
A lot of people came and fell in love with him. So after another day of goodbyes from all,
we took Liam home.

Terry and I wanted him to experience everything he could now that we weren't sure how
long we had together. Cold, warm, soft, hard, wet, dry, grass, dirt, snow, the experience
of going shopping, and watching Daddy pay bills! He didn't like that! Terry also wanted
him to experience camping, and the mountains. Since we had bought a new tent so we
could all go someday when he was older. So, instead of a tent, we decided to rent an RV!
We would go at the beginning of May! On May 5th we were to pickup the R.V. to be
ready to go on the 7th. My parents had decided to go with us, so we were ready! On the
5th we had a MAJOR set back. Liam developed Pneumonia and had stopped breathing.
The mucus that he had been developing was getting to the point he couldn't clear it from
his throat. Mommy came to the Rescue!!! She and a friend, Colleen, had done CPR and
got him back! Off to the Emergency room we went. We stayed for about 7 hours, and after
arranging for Oxygen to be delivered to the house. We came home with our big trip in the
balance. The morning of the 7th, we took Liam to the Pediatricians office. He told us
there wasn't anything he could do that could not be done on the road and to go ahead
with our trip. We packed the oxygen, feeding machine, suction machine, Grandma,
Grandpa, Mom and Dad, and the dog into the RV and off we went to Salt Lake City!!! We
spent about 4 days getting there, stopping and letting Liam see everything around him!
Once we got into the Mountains, it seemed Liam didn't even need oxygen. He was
breathing better, didn't have near the mucus problem and slept better! We stayed about 4
days in SLC and headed toward home. As we got lower in elevation, Liam again started
having breathing problems and we had to "UP" the O2 level. We got home on the 19th,
and things went slowly down hill. Terry would sleep on the couch with Liam next to her
in case she needed to suction him during the night, which would generally be about once
every half hour.

June came, and with it my first Fathers Day. Liam was really sick by this point. He
couldn't move, couldn't clear his throat, couldn't shut his eyes or even blink. The disease
had affected his body's ability to control his temperature and as a result we saw a temp of
107.2 . Liam got LOTS of cool baths those last days to keep his body temp down. Finally
on June 18th, when I got home from work, I noticed a film covering all of one of his eyes
and a lot of the other, because he couldn't blink anymore. I cleaned it off, walked outside
and cried. I asked God, if he was going to grant Terry and I a Miracle to do it. If not, stop
Liam's suffering! He's only a baby! Even I pray for a "clean kill" when I go out hunting!
Don't make my little boy suffer anymore!!!!! That night, I kissed him goodnight, and told
him "I Love you and it's OK to go. I understand." At 6:40 A.M. the next morning the 19th,
Terry came into the bedroom and woke me saying," I think we need you." I walked into
the front room and found Liam in his "bouncy seat" looking toward were Mommy slept on
the couch.

I knew God had another Angel in Heaven, and we'd have a hole in our Hearts that would
never heal!
The Liam Hammonds Memorial Foundation

Helping Children and Families dealing with Krabbe and other Leukodystrophies