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.