Our daughter Julia earned her wings on September 6th 2013.
She was born in October 14th 2010 with a congenital heart defect named Hypoplastic Left Heart Syndrome. She basically had half of her heart.
She underwent two open heart surgeries and after the second one we learned she had Kabuki Syndrome. A rare unpublished disorder discovered in the 80's that occurs in approximately 1 in 32,000 newborns and is caused by mutations in the MML2 gene. So every cell in Julia's body was affected.
Besides the defect in her heart, she had the left kidney smaller than the right, short fifth fingers, the roof of her mouth was very high and combined with a weak muscle tone, eating was difficult, so she was fed through a tube inserted through the abdomen that delivered nutrition directly to her stomach.
Her immune system was also weak and she had problems with her hearing so she talked a little bit higher than normal :)
As difficult and stressful as it seems, we enjoyed every minute with her. We tried to do “normal” things and activities. In her short life against the odds, she learned to crawl and then walk and eat by mouth! All of these, thanks to the therapies we attended 4 times a week at Our Children's House at Baylor.
During our hospital stays at Medical City Children's Hospital and our doctors’ appointments at Children’s Medical Center in Dallas, TX, we were always pampered by different non-profit organizations, who gave us from blankets, to stuffed animals, to meals at the cafeteria, to parking lot passes and much more.
I really don't know what happened, when we lost our battle, in this case our daughter’s battle, all the strength and energy that we used in our daughter’s journey, now needs to emerge in helping others. And it's a strong desire that heals our minds and souls.
And that’s why Maria, our brave oldest daughter, my husband Mauricio and I founded The Pulga’s Heart Project.
PULGA WAS JULIA'S NICKNAME