Chasing Moonbeams
Canavan Family Spotlight – July, 2010 – Lana Swancey

(Don’t forget that you can help Lana and all the other kids with Canavan disease by voting for Jacob’s Cure in the Chase Giving Challenge.  Just click the button below and help us win $250,000)

What I thought would be some of the happiest times for our family, the birth of our second and last child, turned out to be one of great loss.  I remember sitting on my living room floor rocking a screaming baby girl who was only four months old and seeing the twin towers collapsing on television.  I thought life was more than I could handle and surely the end of the world was near.  My heart was so heavy and sad that I wasn’t sure who was crying harder, me or my precious baby girl, Lana, who had just been diagnosed with Canavan Disease.

Lana was born on April 30, 2001 as a “genetically correct female.”  All the testing done on her amniotic fluid came back normal when Downs Syndrome was expected during pregnancy.  For the first few weeks of life, Lana was pretty happy and progressing as any newborn would.  However, we noticed she had stopped holding her head up and focusing on our faces and tracking with her eyes.  She also began holding her arms straight forward when she was in her swing and screaming nonstop.  In the summer of 2001, Lana was diagnosed with Canavan Disease with a mutation that was unique.  Because the specific mutation was not tested for during prenatal testing and my husband and I were not Jewish, Canavan had not been considered as a possible disease for our children.  As we found out, that is not the case at all.

As Lana slept in the hospital crib, fragile and weak from the weeks of diagnostic testing that had been done on her, a geneticist walked in the room and seemed very proud of himself for solving the mystery that was robbing Lana of life.  We were overjoyed by the thought of knowing what was going on with her and moving on to treating her.  However, our joy ended when the doctor began giving us the prognosis.  All I remember hearing as my legs folded under me was, “there is no treatment, no cure and she will most likely die before her first birthday.  If she does live, she’ll be in a vegetative state with very little hope of living past three.”  For the next few months, I wasn’t able to be by myself because all the dreams that I had envisioned for my daughter were now replaced with ones of me burying her.

After months of searching and prayer, I realized that God had not wired me to give up on anything, especially my own children.  With the help of my family, we found other Canavan families fighting to save their children, like Jacob, Lindsay and Max.  We started raising money for research and focused on the fight to save Lana.  We had been told by some doctors and others that we were basically “chasing moonbeams.”  Man, were they wrong.  The day before Lana’s second birthday, she participated in a gene therapy trial that help to slow the progression of CD.  Now at nine years old, she is taking medications that have been researched and proven to help stabilize the cells in her brain.  She is happy, physically and cognitively progressing, alert and interacts with those around her.  We spend our days reading, singing and playing games with her to keep her brain stimulated and to minimize atrophy.  Lana has eight different teachers and therapists (not to mention my family) working with her each week to help her maintain and build skills.  As all of those that work with her will tell you, there is something very special about Lana.  Because she is the only child that has ever been diagnosed with CD in South Carolina, I thought it was just because she was mine that I thought she was so special. However, when I met other Canavan children, I realized that all of the kids possess a very special “something.”  My brother once said that when he has had a bad day, all he has to do is spend time with Lana and everything is good again.

Being thankful for Lana and her life is an understatement.  We are convinced she and other CD kids are here for a clear purpose.  She has taught us what love truly is and how to give and receive without expectations.  Some days are very hard but we treat every one as a gift.  One day we all will pass, but I will tell you, I will not give up on Lana and the other children fighting this disease.  We are so grateful to all those who helped us and continue to be by our sides to chase those “moonbeams” that are saving Lana and giving her a good life.  With the stem cells being researched by the most dedicated and talented researchers, we continue to look forward to tomorrow, knowing the cure is on its way.  Coty, our now fourteen year old son and Lana’s heart, asked me several years ago, “What would we have done without Lana?” … I can’t imagine.