Gracie Marie Bienvenu was born to Brooke & Brandon Bienvenu on March 6, 2015 at Texas Childrens Hospital in Houston. She is a beautiful blonde haired, blue eyed girl who looks just like her big sister & two brothers. Unfortunately, she has inherited a rare genetic disorder known as Smith Lemli Opitz Syndrome (SLOS). SLOS makes the body unable to make enough cholesterol to support normal growth & mental development. At this time we are hoping that Gracie will have a mild form of SLOS but only time will tell.
She has several congenital heart defects, a cleft palate, extra fingers & toes. These defects will require multiple surgeries to correct. Her optic nerves are thin & the left side of her brain is not as fully developed as the right. At this time it is too early to determine if other systems of her body will be affected by SLOS. Gracie has already had surgery to unattach her tongue from her soft palate, insert a feeding tube, and a tracheostomy.
There is no cure for SLOS at this time. There are ongoing clinical trials. One of which is in Aurora, Colorado with one of the doctors who discovered the syndrome. Brooke has contacted the doctor and once Gracie's other medical conditions have been stabalized, the doctor would like the family to go to Aurora so she can examine Gracie and possibly enroll her in the trials.
Gracie has been in the neonatal intensive care unit since her birth and we are unsure as to how long she will be hopitalized.
Gracie and her entire family have a long, arduous medical journey ahead. Any prayers and donations that could help them through this journey would truly be a blessing from God and deeply appreciated.
She has several congenital heart defects, a cleft palate, extra fingers & toes. These defects will require multiple surgeries to correct. Her optic nerves are thin & the left side of her brain is not as fully developed as the right. At this time it is too early to determine if other systems of her body will be affected by SLOS. Gracie has already had surgery to unattach her tongue from her soft palate, insert a feeding tube, and a tracheostomy.
There is no cure for SLOS at this time. There are ongoing clinical trials. One of which is in Aurora, Colorado with one of the doctors who discovered the syndrome. Brooke has contacted the doctor and once Gracie's other medical conditions have been stabalized, the doctor would like the family to go to Aurora so she can examine Gracie and possibly enroll her in the trials.
Gracie has been in the neonatal intensive care unit since her birth and we are unsure as to how long she will be hopitalized.
Gracie and her entire family have a long, arduous medical journey ahead. Any prayers and donations that could help them through this journey would truly be a blessing from God and deeply appreciated.