On July 30, 2011, after a generally normal pregnancy, we
welcomed our beautiful Baby Reesa into the world. It was the happiest day of
our lives! Reesa was delivered via emergency c-section because her heart rate
was dropping during labor, which is a common occurrence during child birth.
Reesa was 7lbs 13oz, 21 ½ inches long and had an APGAR score of 9. It was such
a joyous occasion as Reesa is our first child and the first grandchild on both
sides.
The first 6 months of Reesa’s life were completely
normal. She was breastfed and was a terrific eater. Her height and weight were
always in the 80th percentile range for her age. She was also sleeping through
the night by 6 ½ weeks. We introduced solid foods at 5 ½ months and it was so
much fun to watch her squeal with excitement in her highchair. Then at 6 ½ months
we started to notice some changes.
We took Reesa to the pediatrician because of a typical
stomach sickness. While there we mentioned that Reesa seemed to be a bit behind
on some of her milestones (specifically grasping and rolling over), she also
had some stiffness in her limbs and clenched her fists more than other babies
her age. We knew that every baby develops at different rates so the concerns
weren’t terribly alarming. However when the doctor measured Reesa’s
head he noticed an unusually large jump in size from her 6 month appointment. Out
of an abundance of caution he asked that we check into the hospital for an MRI
to rule out Hydrocephalus (fluid in the brain) which can be common in infants. The
pediatrician said he would have a neurologist examine Reesa while in the
hospital to address the developmental delays that we had mentioned. Our main
concern was Hydrocephalus the neuro exam was more of secondary concern. The MRI
came back negative and it turned out that Reesa just has a big noggin (thanks
to her dad and grandpas!). However the neuro exam was much more distressing.
After a 20 minute clinical exam the pediatric neurologist told us that he
feared Reesa had a Leukodystrophy, a group of rare genetic disorders that affect
the white matter in the brain. He said he would need to do blood tests to
confirm or rule out, and the results wouldn’t be back for over a month.
After researching Leukodystrophy in the hospital it hit us that our baby might
be very sick with an extremely rare and grim disease. We were horrified. However
this was not a diagnosis, it was simply the doctor’s opinion after
playing with Reesa for 20 minutes. After going home and regaining our composure,
we were hopeful that the blood tests would come back negative. The odds were
in our favor as this disease is extremely rare.
The next 5 weeks were unbelievably difficult, not only anticipating
the test results, but Reesa also started to exhibit some worrying changes.
Reesa began having feeding difficulties and starting losing a significant
amount of weight. Our pediatrician admitted her to Phoenix Children’s Hospital.
After 6 grueling days of tests, IVs, X-rays, swallow studies, an endoscopy,
colonoscopy, and lots of poking and prodding we were released from the hospital
with no answers but Reesa was now on an NG feeding tube to supplement her
bottle feeding. We still had lots of hope that this was just a bump in the
road but in the back of our minds we had a sinking feeling. The next couple of
weeks were absolute torture. Reesa became extremely irritable and at times
inconsolable. She would cry for hours to the point that her clothes would be
soaked with sweat. She would hardly sleep. It was hell and we would have never
have been able to get through it had not been for our new, live-in nurse (Grammy
Flo). We, and all of our friends and family, prayed day and night that all of
the test results would come back negative.
On April 2nd, 2012 we received the phone call
from our neurologist, the test results were back and Reesa was diagnosed with
Krabbe Leukodystrophy, an extremely rare genetic disorder with no cure and
generally fatal before 2 years old. Our beautiful baby girl is dying. There
are no words to express the shock and devastation that we are feeling.
We’ve been overwhelmed with an outpouring of support
from friends and family. The purpose of this website is to keep all of those
who love Baby Reesa informed about her status and the ability to share in her
life. Please come back often and share your feelings and comments. Knowing
that we are not in this alone gives us the strength to get through this
challenging time.
As dire as Reesa’s situation may seem, we are committed
to making the most of every moment we have with her. Every day is a blessing. Our
love for each other and for her will carry us through.
