Our son Lucas was born on June 25, 2008 with a very rare condition called Caudal Regression Syndrome. It occurs at a rate of approximately one per 25,000 live births.  It is a rare disorder in which there is abnormal fetal development of the lower spine.  It can lead to a variety of medical problems ranging from partial absence of the tail bone regions of the spine to more severe cases involving major malformation of the lower vertebrae, pelvis and spine, as in our son Lucas' case.  This disorder has primarily affected Lucas' hip and leg development due to the absence of his spine from the L2 vertebrae down to the sacrum, which is absent as well. Both of Lucas' hips are dislocated. He is at risk for neurogenic bladder/ neurogenic bowel. We won't know the outcome of that until he is a little older. He has had surgical procedures on both feet and all ten toes and has been through many rounds of leg castings. As far as his hips go there is nothing that they can do at this point. Doctors have told us that his primary source of mobility will be a wheelchair. As of now he is a pro at commando crawling, when he is casted they don't slow him down at all!

    This of course has been a very emotional year, there are a lot of unknowns in such a rare disorder.  This has also been very financially draining (Specialist & Doctor Co-pays, travel expenses, prescriptions, AFO's/ Leg Braces, etc).  After having exhausted every financial avenue of our own, a good friend of ours did some online research and told us about Charity for Children.  We were hesitant to apply as we are used to being declined.  Ultimately, we submitted an application, and the very next day we received a phone call from the Executive Director Nina Albino with good news.  We were getting help!  Nina has been a godsend, she has helped with co-pays, travel expenses and monetary assistance.  She has also been a person there just to listen and provide emotional support.  We thank god for such a great person and a great organization.  Every little bit helps and we are truly grateful and always will be.

    Life has not been easy but we are truly thankful for all the positive outcomes. Each day with Lucas is a blessing and we will forever be proud that he is our son.  Despite his disability, he is a very happy boy, his strength and determination is amazing.  We just want to thank Charity for Children for continuing to make a difficult time a lot easier.  God Bless you all! 

Sincerely,

Josh & Roberta Abreu