Leighton's Story

Images Captured by Misty Dawson Photography

Meet Tiny Light Leighton.  Leighton was born with a very rare disease called X-Linked Adrenoleukodystrophy (X-ALD).  This disease causes an accumulation of very long chain fatty acids in the tissues of the body, causing neurological problems and adrenal gland malfunction which causes Addison’s disease.  Researchers are still attempting to understand this disease.  Using stem cells and bone marrow, there have been some successful transplants where the missing gene is replaced with the donor cells.

This is a hereditary disease.  Leighton’s Uncle, who also has X-ALD, has had a bone marrow transplant.  While he still needs to be monitored and take medication daily for Addison’s Disease, the transplant was successful at giving his body the gene he was missing.  Having a loved one living with the disease helps to keep Leighton’s parents optimistic.  They find it very difficult dealing with the unknown.  There are no known tests to identify the variant of the gene Leighton has, so they will not know how he will be affected until he is at least two years old.  Until then, he will have an MRI every six months to monitor for brain changes, and he has also been asked to participate in a trial research program at Toronto’s Sick Kids Hospital.

There is so much positive support out there; many wonderful families who are dealing with this everyday.  Knowing they are not alone and experiencing joy from having such a happy baby, helps his parents everyday.  Leighton is just learning to crawl, and loves to play with his older brother's toys.  At the end of the day, he sleeps between his Mommy and Daddy as they stay strong, think positive, and smile a lot.  There is new research being done everyday; a cure is just around the bend!

Story by Sue Renad