Support Sweet Olivia

While I was pregnant, I got the news my Sweet Olivia would have Kidney disease. However, on March 7th Olivia was born and the doctors told me she did not have kidney disease but they did not know what was going on with her body. On March 12th,after 5 days of gut wrenching new developments that were going wrong with her body, the doctors broke the devastating news to me, Olivia has Trisomy 13. They explained to me that it was 3 strains of the #13 chromosome. This is what was causing her little body to go haywire. The doctors further explained to me that this rare terminal genetic disorder would cause her to have a very short life expectancy. Statistics state only 90% of the children affected make it to their first birthday. During their short life they will endure health problems and be difficult to survive daily life. Olivia has seen 13 specialists in her short little life and continues to see them regularly.

One of the main things the doctors were preparing me for was that her brain is underdeveloped in 2 areas. The doctors were explaining to me that she may never be able to talk, walk or even eat by herself. She would have to have occupational, speech and physical therapy. That she may not be able to even sit up by herself. And if she continues to live, she would be significantly behind her peers in normal daily activities.

The doctors found that her main artery to the bottom of her heart was interrupted. Interrupted means it never finished developing all the way to the heart. Instead littler veins have formed around the interrupted part back to the heart. Because of this issue she has bad circulation, a blood clot in the same vein and the right side of her heart is dilated with 2 small holes. She has to visit a cardiologist on a regular basis to keep an eye on her heart.

Due to her heart being dilated it is a struggle for her to nurse. Sucking a bottle or even crying like a normal baby for Olivia is like running a marathon for an adult. Since she is unable to take all her necessary feeding by mouth she has had to have a gastrointestinal tube inserted into her stomach, which she is fed through at every feeding.

Along with those issues her kidneys are enlarged, the doctors were having a difficult time understanding what is causing them to be this way. Olivia's kidney doctor stated that she believes Olivia has Infantile Polycystic Kidney disease as well. She is requesting that Olivia's father and I get tested to see if either one of us is a carrier for the disease. Her father does not have health insurance and the tests are expensive.

As of today, she is taking half of her necessary feeding by mouth and the other half by her tube. Her kidney doctor wants to see her in 3 months for more tests. Her cardiologist was to see her in 3 months to check her heart again. We are hoping the holes will heal themselves. The genetic doctor wants her to have further tests done.

I have never been the type to ask for help. However, since her doctors are 2 hours north of where we live, the tests are more then we can afford, and I am unable to work due to her condition. I am having a hard time financially to take care of her. All the money donated and raised will go toward her medical travels, the tests, and there is an annual conference that I would like to attend. It covers all aspects of the disorder. There will be doctors attending to talk about new discoveries relating to the disorder.

I thank everyone for their donations and prayers. We are blessed to have such sweet and loving strangers support us through prayer. GOD Bless everyone.