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Friends,

On January 9, 2010 I will be participating in the Disney Marathon at Walt Disney World with the Miracle Marathon group. My focus and reason for training and completing this event is to gain financial support and awareness for the 11q Research and Resource Group (www.11qusa.org) in honor of my daughter, Faith.

Those of you who have met Faith know how exciting it is to watch her grow and progress. This is in large part possible due to the research done and information shared by the 11q Research Group. Those who don’t know about Faith can read a little more about her amazing journey.

During my pregnancy we found out that Faith has an 11Q deletion, also known as Jacobsen’s Syndrome, a rare chromosome disorder in which a portion of the 11th chromosome is missing. It affects about one in every 100,000 births. The same day we found out that Faith has Hypoplastic Left Heart Syndrome, which means the entire left side of her heart did not develop. Doctors were unable to tell if she would survive after delivery. A late ultrasound showed that she hadn’t been growing as expected so I had to deliver her 2 weeks early via c-section.

Faith was born on September 1, 2004 at 5 lbs. 10 oz. Due to an imminent hurricane threat and the fact that our Orlando area hospital did not perform the types of surgeries Faith’s heart would need, Faith was flown to Miami Children’s Hospital a few hours after birth where she would have to undergo heart surgery. Several events and complications lead to the discoveries that Faith had sustained a brain bleed, was possibly unable to produce her own platelets (we later learned she has Paris-Trousseau Thrombocytopenia, a bleeding disorder highly common with the 11q deletion), and would possibly need lifetime transfusions and a bone marrow transplant. At this point, with Faith in the ICU, the surgical team decided that because of the high risks of the bypass surgery and bleeding, her small size, her brain bleed/bleeding disorder, and her uncertain future that it would be best for us to take her home and let her pass away in peace.

Of course we refused. Instead we asked for information for research hospitals, pleaded with the Chief of Pediatric heart surgery, wrote letters, and just refused to take her home, living in the hospital for weeks and weeks. We knew she was a fighter! Because while most children with HLHS go into heart failure days after birth, Faith just kept going. The Chief of Cardiovascular Surgery finally agreed to perform surgery on Faith but gave us, her parents, a bleak outlook. Faith was 5 ½ weeks old when the surgery was performed, and by this time it was discovered that Faith COULD indeed produce her own platelets. After a 5 hour surgery and much bleeding and uncertainty, Faith was doing great!

Faith is now 5 YEARS OLD and she continues to amaze her doctors! She has undergone a total of 3 heart surgeries, skull surgery and eye surgery and the results are to date successful. After her trying and uncertain first months, Faith continues to grow, excel and be curious of the world around her. She can’t get enough of her older brother and sister and she currently attends a pediatric facility where she receives physical, occupational and speech therapies and is monitored by nurses. She says and signs a few words and is currently at the developmental level between a 1 and 2 year old and is constantly advancing. Faith loves attention, socializing, cuddling and the outdoors. And even though she has only half a heart, her energy level exceeds that of everyone else. Her strength and fight and perseverance touch everyone she meets.

So, here is what you can do: First, pray. Pray for Faith and others like her. The 11Q Research and Resource Group provides invaluable support to our families as well as life saving research. They have a dedicated cardiologist who does research exclusively for these children as heart defects are very prevalent. They have seminars and conferences studying medical and social conditions for these children and adults. Second, give. Send a check made out to Miracle Marathon, with my name in the memo line of the check and return it to me at the address listed below. Or you can go to www.miraclemarathon.net and click on the donate button located at the upper right. Please be sure to put my name (Jana Wells) in the runner line. My goal is $1,000.00, which is not a huge amount, but will go so far in providing hope and support to families like mine. I hope you will help me reach my goal. Even just a few dollars would be appreciated.

Many Thanks,


Jana & Faith
11410 Cypress Drive
Clermont FL 34711


*You will also get a receipt with information for your tax records mailed to you.