Lacey’s Story
In July of 1999 Lacey was born in Winter Haven, FL. She was immediately flown to Tampa General's NICU. After 2 weeks of intense testing the doctors’ diagnosed her with King Syndrome. She is only the 3rd child to be born in the US with this syndrome. The doctor's said she would never live.
At 3 weeks old she had her first surgery, this was to stitch down her diaphragm to allow her lung to work. This surgery was unsuccessful, so Lacey had to be on oxygen 24 hrs a day. Lacey's spine was crushing her lung, causing her to have chronic respiratory insufficiency. She had contractures of all her joints, causing her to be unable to raise her arms, walk or crawl. She also had severe kypho scoliosis, webbing of the neck, severe hearing loss, hypoglycemia, malignant hyperthermia, failure to thrive, a severe club foot and a vertical tails. At 1 year old she had 3 surgeries to help correct her feet. She also had to have 2 surgeries on her hips. When she was 3 years old she was still on oxygen and on a bi-pap machine to help her breathe. Her lung doctor told us her condition was getting worse & if something wasn't done we could lose her. Her spine was now at an 86 degree curvature, & it was crushing her lung in to her pelvic bone. Nobody in Florida could help her so they got us in contact with a doctor in Texas who had invented a surgery they thought might save Lacey's life. In Sept of 2002 when we flew out to meet with the team of doctor's Lacey was 3 years old and only weighed 18 lbs. The doctors agreed to do the surgery if Lacey had a feeding tube placed to help her gain some weight and a port so they could access her IV's since her veins were not very good. We came home & Lacey had both of those surgeries. In April of 2003 we flew back to Texas for the Titanium Rib Implant. Lacey was in a coma & on a respirator for 9 days. We were able to fly her back home a month later. The surgery helped and she was able to eventually come off of the bi-pap and is only on oxygen at night and when she is sick. Lacey had a great desire to walk and once again there was no one in Florida who could help her. Through the doctor in Texas we were able to find a surgeon who could help her but he was in Seattle. In May of 2007 we flew out and met with him and he scheduled her surgery for Oct. of 2007. She had 2 surgeries on her legs in Seattle, and we were able to bring her home 1 week before Christmas. 2010 - Lacey is now able to do some walking with the help of a walker. She has now had a total of 26 surgeries & we travel every 6 months to Texas for surgery on her spine. She will continue to have surgery every 6 months for the next 5-6 years. The travel cost is an average of $3,000 - $5,000 every 6 months. Lacey requires oxygen on the plane which is $400 each trip, we rent a car and are usually in a hotel for about 2 weeks. We also have to eat each meal out or at the hospital. Lacey is a precious child with a positive attitude.
Thank you so much for considering Lacey for this fundraiser. This will truly be a blessing to her and our family.
Update 2011 - Lacey is now 12 years old. I would say that it is pretty awesome for a little girl that doctors did not expect to live a minute outside of the womb. She is truly a miracle and every day is an added blessing.
Lacey's last surgery was September 20, 2011 in San Antonio, TX and it went very well. This was her thirtieth surgery. While we were in Texas the doctor met with us and explained some of his thoughts on how to manage the complexities with Lacey's spine. He feels that she should have another implant on the other side of her spine to try and help with her scoliosis and pelvic issues. This surgery will need to be done in March, when she goes for the surgery on the implant she already has. This will be a serious and major surgery and will add an extra surgery every six months for Lacey. We will have to stay in Texas for a longer period of time for this due to the severity of the surgery.
Lacey has such a positive outlook on everything, and although she knows the pain involved with any surgery she is ready to take on whatever situation she has to because she loves life and wants to do what it takes to make it.
Thank you for your continued support!!
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Topic: 3rd Annual Lacey Pate Poker Run (Read 294 times)