HI WE ARE THE PERKINS FAMILY AND WE HAVE A DAUGHTER WITH ALOBAR HOLOPROSENCEPHALY I DIDN'T KNOW THIS UNTIL I WAS 32 WEEKS PREGNANT. SHE IS NOW 19 MONTHS OLD AND DOES QUITE WELL. SHE HAD A CLEFT LIP,STILL HAS A FLAT NOSE,HAS SEIZURES (WHCH ARE BETTER CONTROLLED NOW) AND DIABETES INSIPIDUS. NOW THAT SHE IS GETTING OLDER THINGS ARE GOING TO BECOME MORE DIFFICULT. I AM NOT ABLE TO WORK VERY MUCH DUE TO CARING FOR HER. I WOULD LIKE SOME INPUT ON WHAT DO OTHERS DO TO MAKE A LIVING AND TAKE CARE OF A CHID WITH A DISABILITY. WE MAKE TO MUCH FOR SSI BUT SHE DOES GET HER MEDICAL CARD. IF ANYONE HAS SUGGESTIONS FOR US OR WOULD LIKE TO ENLIGHTEN US ON WHAT WE NEED TO EXPECT PLEASE EMAIL US. I NEED HELP ON HOW TO HAVE SOMEWHAT OF A NORMAL LIFE WITH A CHILD OF THIS DISABILITY. WE LOVE HER SO MUCH AND I WOULD'NT TRADE HER FOR 1 NORMAL CHILD BUT I AM HAVING A HARD TIME TRYING TO WORK AND TAKE CARE OF HER . THANKS THE PERKINS FAMILY