Please think of Scott the next time the Republicans try to repeal the ACA. This year, Republicans in Congress have attempted several times to kill the Affordable Care Act, a health care bill enacted in 2010. The ACA was a huge improvement over health care coverage previously available in the U.S. It reduced the power […]
Scott is studying software engineering at Rochester Institute of Technology (RIT) in Rochester, New York. It’s a five-year program with co-op requirements. Scott has fulfilled those requirements by working for two different organizations. The first is ANSYS, an engineering simulation company, where he worked for three summers as a programmer in the Meshing Development Unit. […]
Scott received a new clinical diagnosis of a mitochondrial disorder in August of 2016 and was prescribed a mito cocktail to prevent any further deterioration and possibly improve some the neuromuscular symptoms he’s been experiencing. So, how’s that been going? The excellent news is that he has noted some improvement! See the entry on the […]
Scott is now in year four of a five-year software engineering program at Rochester Institute of Technology, which is about five hours from home. Going away to school in 2013 was rough on him because it forced him out of the protective cocoon of home, school, and friends. Most college freshmen face this, but it’s […]
Scott is an avid programmer. He fell in love with programming around the age of 13 and began teaching himself various programming languages. Often, when we went in to tuck him in at night, he would be reading some three-inch thick book about Python or C++ or some other language. He currently knows 20+ languages, […]
We met with a metabolic doctor in August who thinks Scott’s symptoms could be caused by a mitochondrial disorder. This was not a complete surprise to us, but definitely good news since we weren’t getting anywhere with the BVVL diagnosis. The doctor based his opinion on an extremely sophisticated analysis of Scott’s acylcarnitine profile and […]
A beautiful husky named Buddy has joined our family and Scott has completely fallen in love with this dog. He enjoys giving Buddy head and chest scratches and playing with him. Like all dogs, Buddy sometimes (often?) is big goof, giving Scott lots of laughs. Buddy suffers with unexplained bouts of intestinal problems, but with […]
A few months after Scott was diagnosed with BVVL (back in April of 2012), the administrator of a BVVL Facebook page contacted me and invited me to joined the closed group. I am not a fan of Facebook, but since the disorder is so rare and there were no support groups in my area–much less […]
In April, we flew out to Arizona for an amazing week in that beautiful state. We saw the Grand Canyon and Meteor Crater and then spent four days at the remote Stagecoach Trails Guest Ranch near Yucca, which is in the Mojave Desert in the western part of the state. The guest ranch leg of the […]
It was a real milestone for Scott when he passed his driver’s license test early this year. It’s great to have another driver in the house and Scott enjoys going off on his own to visit friends, do some shopping, and take his little sister out for ice cream. He has no vehicle modifications, although […]
Scott graduated from high school on June 7, 2013. This is a momentous milestone for any young person, but is especially meaningful to us. Four years ago, when Scott’s health began to deteriorate, we didn’t know if he would live to see this day. We are so excited and happy for him, but also sad […]
In the fall of 2012, our local school district approached Scott about developing an online application for standardizing teacher evaluations in accordance with state requirements. Scott agreed to be the project leader, which involved designing the application, establishing project specifications, working with the assistant principal responsible for the project, coordinating the work of other student […]
Scott plans to attend Rochester Institute of Technology (RIT) in Rochester, NY, in the fall. In addition to having an excellent program for software engineering (which Scott is majoring in), RIT has many support services for disabled students, including those who are deaf or hard of hearing. The National Technical Institute for the Deaf (NTID) […]
We are waiting for the results of genetic testing to confirm Scott’s neurologist’s clinical diagnosis of BVVL. Read about that and the latest on Scott’s medical condition, including a hearing re-check and speech therapy here. In other news, a woman who has started a BVVL private discussion group on Facebook found us through this site. […]
We met with representatives from Make A Wish earlier this year and discussed some possible wishes for Scott. They are investigating these and determining what’s feasible. The tentative plan is to have the wish fulfilled this summer.
Thank you to everyone who supported our walk on October 27, at DogFest, a fund raiser for Canine Companions for Independence (www.cci.org). Scott and I (Scott’s mom) were the top fundraisers with a total donation amount of approximately $800! CCI is a fantastic organization. It is a national, non-profit organization that trains assistance dogs for people […]
An acquaintance put us in touch with good friends of theirs, Tom Anderson and his wife, Marianne Anderson, who worked at Microsoft in the early days of Windows and Excel. Tom was Program Manager on such products as Windows 3.11, Windows for Workgroups, Windows 95, and Internet Explorer, among other projects. Tom is now working […]
Scott has been selected to receive a Character Counts Recognition Award from the municipality in which we live. The award honors residents who “promote and model good character through their service and actions in outstanding ways” and who are rarely publicly recognized. Unbeknownst to us, one of Scott’s former Middle School teachers nominated him for […]
We received a clinical diagnosis for Scott’s condition this month from his neurologist at Children’s Hospital in Pittsburgh. “Clinical” means the diagnosis is based on observable symptoms rather than finding a genetic mutation. She believes he has a motor neuron disease called BVVL (Brown-Vialetto-Van Laere), which is extremely rare. See a more complete description of the discovery […]
In the summer of 2012 (when Scott was between 11th and 12th grades), he participated in Andrew’s Leap, a computer enrichment program for high school students that is run by the Computer Science Department at Carnegie Mellon University (CMU) in Pittsburgh, PA. Participants must take a qualifying exam to be accepted into the class. Hundreds […]