Donna Kay Langan's Page

I continue to be amazed by the amount of people I meet each day in the human health service industry who somehow form a genuine connection to our family or through meeting Tyler. I thank you from the tips of my toes to the top of my head for learning about, caring about and reaching for the best for my child. I am in debited to you and every night to the universe I whisper your name and wish upon a star that your light continues to shine on everyone you touch with your warmth and kindness.



I… Continue

Here is an excerpt from our caring bridge site. I wrote it to describe my feelings of having a child with a rare terminal disorder with no known cure or treatment.

Let’s pretend there are two kinds of disease. Blue disease and Red disease, both are made up in my mind to create an example and are not intended to resemble any other real-life childhood afflictions, but can resemble many different types of anomalies that afflict our kids today. I am making generalizations here with the consideratio… Continue

Our youngest son Tyler has been diagnosed with Mucopolysaccharidosis, a rare genetic disorder in the family of Lysosomal Storage Disorders. Specifically he has MPS III A or Sanfilippo Syndrome. "MPS is caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS and related diseases, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in… Continue