Luc is three years old and although this picture looks like a healthy little boy, he is very very ill. Luc was born with nail deformity (progressive nail dystrophy) since birth and since then it has progressed to a much more serious illness. He has patches on his tongue (leukoplakia), skin pigmentation and critically low platelets counts  (pancytopenia). Luc's count has been between 13,000 and 19,000.  Extremely low, since November of 2000 when the family found out that Luc was ill.  One of his nails fell off and blood test identified that his blood platelet were critically low. The normal count range is between 150,000 to 450,000.  Doctors diagnosed Luc with dyskeratosis congenita  which is a rare multi system disease, skin disorder. This disease is very rare (only 200 reported cases world wide) and more common in males than females. Doctors have told the family that he needs a bone marrow transplant.  (Bone marrow failure is the #1 cause of premature death in 50% of cases)  He has been put on the list of the Unrelated Bone Marrrow Donor Registry and now he waits. Luc's older brother Mathieu and both his parents were tested to see if they were compatible for bone marrow transplant. All three were negative they did not match. His only hope is they find a match through the Canadian Blood Services Bone Marrow registry.  There is hope that a donor may be found in Canada or in another country. Luc's future is uncertain without it. Please be a donor and help save a life.  Luc of course being a little boy he loves to fight with his older brother. He likes to play on the computer as well as watch cartoons on television.   Please send a card to this child. Let him know he is not alone.

Luc’s body accepted the bone marrow and he was on his way to
          recovery from his symptoms which included, nail deformity
          (progressive nail dystrophy) since birth and since then it had
        progressed to a much more serious illness. He had patches on his
        tongue (leukoplakia), skin pigmentation and critically low platelets
       counts  (pancytopenia). Luc's count was been between 13,000 and
      19,000.  Extremely low, in  November of 2000 when the family first
        found out that Luc was ill.  One of his nails fell off and blood test
      identified that his blood platelet were critically low. The normal count
          range is between 150,000 to 450,000. After his bone marrow
         transplant Luc had been holding his own. The transplant was a
       success, but still remained anemic and his blood product counts still
      low compared to the normal counts of a healthy child. Luc looked like
      he was going to be out of the woods, but last year proved to be a bad
                          year for Luc yet again.
In April 2005, Luc was airlifted to Toronto, for internal bleeding
        which lasted 3 weeks.  They ran several types of tests including a
      capsule endoscopy (small camera that is inserted  and travels through
       the stomach and the intestines taking 2 pictures every seconds as it
       runs its course, during 8 hours, then it comes out with the bowels a
        few days later).  With all those tests done, the doctors didn’t see
       much, except for the whole stomach and bowel lining were red and
       irritated and inflamed, which is part of the Dyskeratosis Congenita,
      but at the moment don’t know how to treat it.  They gave Luc some
      medication for bleeding ulcers while in the hospital, which they figure
      is what stopped the internal bleeding, but they figure that they just put
                  a “bandaid” over the wound so to speak.

           In November 2005, Luc started a cough and a high fever.
       On Monday Dec 5th, he was brought in to see the doctor, where he
                       was diagnosed with the  croup.
       On the Tuesday, he was  brought in to emerg as the fever was still
       quite high.  The doctor in the emerg said it was a pneumonia.  Gave
      him  medication  and a prescription to give Luc, and sent them  home.

       On Thursday, Dec 8th, the fever was uncontrollable and Luc didn’t
      seem to be improving. Again he was taken  in to emerg , where they
                  kept him overnight and ran several tests.

          On Dec 9th, they admitted Luc in to ICU, with a double lung
       pneumonia, then  a few days later, he was AIRLIFTED to Toronto
      Hospital for Sick Children.  Luc remained in hospital from December
       14th, 2005 – January 26th, 2006.  They ran several tests and did a
      lung biopsy on January 5th, and a few days later they diagnosed Luc
      with PULMONARY FIBROSIS.   They said again this is part of the
        Dyskeratosis Congenita which he was originally diagnosed with.

       There is apparently no cure for the Pulmonary Fibrosis other than
        getting a Lung transplant.  At this time, Luc is at home, requiring
      oxygen 24/7 and is presently on Prednisone, to try to stop or at least
               slow down the spread of the Pulmonary fibrosis.

        On January 5th, 2006, Luc also got a G-Tube inserted.  He was
        diagnosed as being chronically malnourished.  He receives G-tube
        feeding at night over 12 hours.  While in Toronto Hockey players
       came out to have their photo taken with Luc who is an avid fan and
            made him smile and forget his troubles for a little while.
 
Our deepest sympathy go out to Lucs family.