Stacey Montgomery
Biography
Coming soon.
Pictures
 Montgomery Family Photo 2007 |
Mariah 16, Chelsey 12, Hailee 11, Stacey Montgomery, Lew Montgomery, Lucas 10. |
 Lucas at 5 months old |
 Lucas 2007 |
My Story
My name is Stacey Montgomery, and I am Iowa’s Lay Advocate Representative. I became involved with Heartland Regional Genetics and Newborn Screening Collaborative as a voice for our youngest son who was diagnosed with a rare, progressive genetic disorder called MUCOPOLYSACCHARIDOSIS (MPS); his form is called Sanfilippo syndrome. Lucas is the youngest of our 4 children; he has 3 sisters who are unaffected with the disorder. Our journey for a diagnosis began 6 years ago when Lucas started losing skills. We spent years explaining his baffling symptoms to specialist after specialist, doing test after test, as well as Lucas having several genetic tests. Lucas has very distinct features associated with MPS, and an appointment with Dr. Sara Copeland, Division of Genetics and Medical Director of Newborn Screening at the University of Iowa Hospital and Clinics, was the start of the answers we had been looking for. Within minutes of meeting her, she explained Lucas had MPS, and research on the internet confirmed his type before we received the blood, urine and skin results 2 months later in January 2006.
Although we were devastated to learn there is not a cure or treatment for Lucas’ form of MPS, we were relieved to have a diagnosis. There was a definite cause for his loss of communication, his regressing mobility and fine motor issues, his lack of needing to sleep, and constant upper respiratory issues. We now had a “name” for his regression in skills, but our next question was “What now?”
Our answer to that was to spread awareness as we crusade to find a cure. I am a dedicated advocate for the National MPS Society and for spreading awareness about MPS disorders and early diagnosis. We became members of the National MPS Society within months of Lucas’ diagnosis; we held our first Walk/ Run fundraiser in September 2006 and raised funds for the society to support research. We will hold our second annual Laps for Lucas walk/run in September 2007 and we will continue to advocate for the MPS disorders, with the hope of earlier diagnosis for other children, and ultimately cures. Lucas turned 10 on July 31st of this year. It was a bittersweet as all of the material on the disorder states his lifespan will only be 10 – 15 years of age. We have not hit the worse stage of the disorder as of yet. This stage will involve seizures, immobility, feeding tubes and the loss of the few words he will still utter for us. But we have hope, abundance of hope, that we can make a difference.
Links/More Info
Lucas' Website
Laps for Lucas 2nd Annual Walk/Run for the National MPS Society
National MPS Society
WHAT IS MPS, MUCOPOLYSACCHARIDOSIS?
MPS and related diseases are genetic disorders that affect major organs in the body, including the respiratory system, heart, bones, and nervous system. Affecting mostly children, it is caused by the body’s inability to produce certain enzymes. The diseases are progressive in nature, and the majority of children affected with the disorders are unable to fight their symptoms long enough to reach adulthood. There are no cures yet, but research continues to offer better understanding and the development of new treatments.