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DHEA HOPE AND BACLOPHEN PUMP

10th December 2014

UPDATE::: HI MY SON’S NAME IS JESSE. HE’S NOW 16 YEARS OLD AND IN AUGUST 15 2008 IT WILL BE 11 YEARS FOR MY SON. IN 1997 HE STARTED LORENZO’S OIL AND DHEA OVER THE COUNTER NATURAL STEROID. YOU CAN GET IT IN THE VITAMINE AREA. . WITH JESSE, HE JUST HAD HIS 3RD BACLOPHEN PUMP PUTT IN. HE NO LONGER SCREAMS IN PAIN FROM THEE TREMMORS IN HIS LEGGS. THE PUMP STILL IS DOING THE JOB. HE HIS STILL TAKEING THE DHEA AND HAS LOST NO MORE FUNCTIONS PHYSICALLY OR MENTALLY SINCE 1999. HE CAN SAY MOM LIKE OM AND DAD LIKE ADD I READ HIS LIPPS MOSTLY I THANK GOD I LEARNED THIS GIFT FROM CHILDHOOD JUST INCASE I LOST MY HEARING. OH! ONE OTHER SIGH IN MY SON AND GREAT UNCLE WAS , LARGE PUPILS ALL THE TIME. HE’S STILL ON THE OIL. MY SON HAS BEEN A EXAMPLE TO ME AND HIS DAD AND WE LIVE FOR HIS BEUTIFUL JESUS SMILE HE SPREADS EVERY WHERE HE GOES. IN THE FLUE SEASON WE KEEP HIM HOME EXCEPT FOR NESSACARY DOCTOR APPTS. AND IN MAY THROUGH THE 1ST OF NOV. WE TAKE HIM EVERYWHERE WE GO . WE WORK AROUND HIS G- TUBE FEEDING . HE CAN BE OFF FROM IT 4 HRS. OF THE DAY. SO THAT’S WHEN WE HAVE FUN . IT IS INPORTANT FOR THESE KIDDS AND OLDER FAMILY TO STILL ENJOY LIFE. HIS FAVORITE PLACE IS PENSACOLA BEACH IN FLORIDA . HE LOVES THE BEACH . ANY THING IS POSSIBLE IF YOU TRY . WE WANT TO SPEND EVERY PRESIOUSE MOMENT THAT WE CAN WITH OUR SON. HE’S ALSO MY BEST FRIEND ,HE LISTENS TO EVERY WORD I SAY , AND SOMETIMES HE AGREE S AND SAYS UHH- HUGH. WE LIVE EVERY DAY AS IF IT WERE OUR LAST. WHEN WE STOPPED LOOKING AT WHAT WE DIDN’T HAVE AND WAS HAPPY FOR WHAT WE DID HAVE EVERYTHING CHANGED IN OUR LIVES . MY HUSBAND AND I HAVE BEEN MARRIED GOING ON 18 YRS. OUR SON HAS MADE EVERY MOMENT SPECIAL FROM THE TIME HE WAS BORN . HE’S BEEN OUR EXAMPLE AND WE’VE LOVED HIM DEARLY . FAMLIES LIVE EVERY MOMENT AS THOUGH IT WAS YOUR LAST. GOD BLESS YOU ALL MRS. CINDY LIGHTFOOT

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ALD Life

Emory University is looking for families in Georgia with individuals who were diagnosed through newborn screening with ALD, as part of efforts to include ALD in the Georgia newborn screening panel. Participants would be speaking with Emory University via phone or email at their convenience. If you would like to give your input, please reach out to Dawn Laney with Emory University at dawn.laney@emory.edu or ‪404-778-8518‬. ...

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