On October 2, 2006 we received this letter regarding Ms. Reese.
Well.....the day arrived last Friday (Sept. 29, 2006) for Jeff and I to hear Reese's results. It was especially hard for me
the morning of because I felt as if a chapter in her life was being closed. It was that one phone call I could still make to
the doctor's asking about her and the anticipation of her medical mysteries. The final results truly shocked us because
it is hard to imagine how our little Reese even was able to be here with us for more than an hour, yet she gave us 5
months. Jeff and I keep telling ourselves that Reese really did have another purpose and it was for us to love and
learn from her so we can be better people in this world. I have never seen such a powerful spirit and it's an honor to
have been chosen to be her parents.
Most of you have probably read her story on littleleakers.com. Within that website, it explains what pulmonary and
intestinal lymphangiectasia are. It also tells us what the lymphatic system does and how vital it is to our bodies.
Unfortunately we don't know a whole lot about the in's and out's of it because it's extremely microscopic. We did every
test we could to see if it would shed light on her delicate little body inside. Most babies with severe pulmonary
lymphangiectasia don't make it and those with intestinal have difficulties in life. In a nutshell, lymphangiectasia is a
condition in which there is widespread dilation of the lymphatic channels. In short, our lymphatic system helps to
defend the body against disease causing agents like viruses and bacteria.....very important! In terms of the
lymphangiectasia, Reese was found to have it throughout her entire body. She had it on her heart, lungs, skin, etc. It
is profoundly amazing how severe and generalized it was. As we know, there is not a documented case of anyone that
has made it long enough to allow someone to have this diagnosis. There must be babies out there born with this but
they either die in utero or are possibly born with hydrops and only live for a few days so they never find out what the
cause of hydrops was. We also learned that it looks as if Reese had no thoracic duct. No one can live without a
thoracic duct and there is no replacement for it. Your thoracic duct is a major lymph vessel that carries lymph in your
body. Whew..... didn't realize I was going to get into her results in this much detail but this is honestly a short
synopsis and the best way for me to explain our Reese to you all.
We hope to have her case documented in hopes that down the road this may help keep a baby alive for long enough
to learn even more about the lymphatic system and how we could ever possibly find ways to extend life in these
precious beings. It blows Jeff and I away as we look back and feel so fortunate we didn't loose Reese to an infection.
She basically had no immune system at all and how she never came down with a major infection....well, there is no
explanation. It also reflects on how amazing the staff at NAMC is and how careful they were with her keeping her
infection free. I believe it's a combination of the Man upstairs and the excellent care she received from her family at
As you all know, Jeff and I still have the foundation set up for Reese. We are in the stages of donating the money right
now. The foundation will continue to remain and Jeff and I hope to make a donation each year to help little angels like
Reese. We want to thank each and everyone of you that keeps Reese in your hearts to this day. I know my baby girl is
right here with us... I feel her presence is with me all the time, just not the way I want it. I have to wait one day to see
her but hopefully as time goes on the pain of missing her will not be so often and intense and I will have more comfort
in knowing she is in a better place.