When we found out our son was going to have Cooley’s Anemia, we started educating ourselves about that genetic disorder and the treatment he would require. I discovered there would be a considerable health care cost and researched potential ways to address this issue. I decided I would try and improve the system (healthcare) not only for my son but also for other families. Since that time (23 years ago), I have been involved in advocacy through several organizations and continue to write, call, and advocate for accessible, quality, and affordable healthcare.

When I look at my daughter today and think of how far we’ve come- that is why I advocate for other children and families – because when you are up to your neck in the mundane battle for your child’s life at the table, taking them to specialists and fighting with insurance companies – you do not have the time or knowledge to take that out to the world. Your world becomes your child’s health. But, for that family- one person’s advocacy can change their lives. That is why I advocate for Homocystinuria (HCU), metabolic and children’s healthcare.

When he [my son] was 7 I looked at his educational and developmental assessments and asked why he could not be in a typical 1st grade class since he needed to work on so many of the same things as other 6 and 7 year olds. It was at that point that I had my first taste of advocacy—bringing in my own information, asking pertinent questions and pulling in higher-level school officials. After 3 IEP meetings with up to 15 people at each one, my son began spending most of his day in a typical 1st grade class with some support. He then spent good portions of his elementary years in general education classes, with specialized instruction in his special ed class at certain times during the day.

As Kelly’s formula got more expensive, we looked for resources, but our income was too high for Medicaid, and the state did not test or pay for Homocystinuria (HCU) medical coverage. That is what started our advocacy activities. I started advocating to get a medical food law in Michigan. My husband and I paid a lobbyist that he knew to help me work with the legislature, and I started to attend the Newborn Screening (NBS) Advisory meeting in the state to meet the other stakeholders. Our bill got a sponsor but never went to the committee. Because of the pressure we put on one insurer, they did change the law to cover some medical formula until a patient is 18. It is a start.

I first got involved in advocacy when [my son] Michael’s school refused to install a wheelchair lift. I visited a building with a platform lift that folded at the top of a landing when not in use. I spoke to contractors, got estimates, and figured out an ideal spot for it. Even though it required a long legal battle, we finally got a lift installed. I know that we made a difference in the community because, today, all sorts of students with injuries and disabilities use the lift. We also were able to start a new policy in the school system so that no student could be discriminated against because of his/her disability.