A Mother & Father's Continued Journey of Love...

Following are clickable buttons that will take you to simple pages we have created to help explain this miraculous, yet obviously overwhelming, journey we are about to embark on to save our second baby's life.

For those of you who may not know, we lost our first daughter, Chloe, to a devastating neurological disease, Krabbe (Globoid Cell) Leukodystrophy.  Our dearest Chloe passed away on December 2, 2002 at 22 months of age.  Here we are two and a bit years later and we are expecting our second baby.  Although there was a 75% chance that our baby would be healthy, unfortunately we hit the 25% jackpot once again.  Our unborn baby is also affected by this horrible disease.

Thanks to the technology of testing our baby in-utero through a CVS test, we were able to find out this news early enough to explore options that were not possible with our daughter, Chloe.  For the first six months of Chloe's life she appeared normal, healthy, perfect and beautiful.  We didn't know that laying deep within her little body was a horrible nightmare about to happen.  Sadly it was too late to save our sweet Chloe's life.  Too much damage had been done by the time we found out.  Thankfully, with our second baby, we were able to know early enough that we can plan for a life-saving procedure right at birth.  Our baby will undergo a transplant (using umbilical cord blood cells from a healthy newborn) to eradicate the Krabbe disease before any damage is done.

One day, hopefully in the very near future, it is our hope that Krabbe disease will be added to the diseases screened for at birth.  Had we known that Chloe was affected right at birth then we would have been able to save her life as well.  Please advocate for newborn screening for Krabbe disease.  Krabbe disease is a most devastating and cruel disease, it needs to be included in universal screening.

As you read about the transplant information, please make allowances for any unintentional errors, omissions, or misinterpretations.  The information provided is simply our interpretation of what we have read, learned and absorbed from the many sources available to us, including medical physicians, websites, and the amazing families who have preceded us on this hopeful and miraculous journey.

There is still so much we have to learn and so much ahead for us and our little one.  With wishes, hopes and dreams in our hearts, and our beautiful angel Chloe watching from the stars above, sweet blessings are on the way...

Meet Our Precious Little One (Click on this box to see a picture of our little one before he or she is even born...)

Making a Decision - Following our hearts (Click on this box to read two letters I wrote to help express our decision-making process...)

Umbilical Cord Blood Transplants (Click on this box to learn what an umbilical cord blood transplant is...)

Advantages of Cord Blood (Click on this box to learn more about the advantages of Cord Blood...)

HLA Donor Matching (Click on this box to learn about HLA matching...)

Success of Newborn Transplants (Click on this box to learn how amazing the transplant procedure is...)

Newborn Transplant Process - Baby Steps (Click on this box to learn more about what will be involved in the process...)

Getting Ready to Go Home (Click on this box to learn more about what will be involved in bringing our baby home...)

 Click on the Butterfly to go Back Home...