Several years ago my husband and I went to the JFK Library.Â As you leave the museum they shuffle you through the gift shop, like all museums do.Â As we wandered through the store I saw this magnet.
Today this magnet hangs in my office and is a constant reminder of what is important to me and how I try to lead my life.Â I think about it often as I consider the things I do each day both in my personal life and at work.Â Each year I choose one charity to focus on and do fundraising.Â My friends joke with me about my annual fundraising requests.
This year my experience has been more than just about raising money.Â What Iâ€™ve learned is that Iâ€™m not the only one with a personal reason for filling out the application to be a part of this team.Â My experience with the Genzyme Team and my patient partnerâ€™s family has shown me that there are a lot of people who are living each day the way I try to, to make a difference.
Most of you know my patient family.Â Anne and Ed have been a part of this team for the last three years and have done so much to support the team.Â They are tireless in their commitment to their family, in advocating for Congenital Hyperinsulinism (CHI), and the Genzyme community.Â Iâ€™m so grateful to Phil for bringing us together and Iâ€™m looking forward to continuing to stay connected long after the 2015 Boston Marathon is over.Â Â Phil you’re right â€œI owe youâ€.
Anne and Ed are a part of this team as some of you may know because their son Chris, my patient partner, has Congenital Hyperinsulinism.Â It took me a lot of Google searches to understand what that meant for Chris and how it has impacted their family.Â I know that Anne has written a wonderful blog about their family but I wanted to share with you what I have learned about this disease.
Congenital hyperinsulinism (CH) is the most frequent cause of severe, persistent hypoglycemia (very low blood sugar) in newborn babies and children.Â It occurs in approximately 1/25,000 to1/50,000 births in the United States. About 60% of neonates with CH develop hypoglycemia during the first month of life. An additional 30% will be diagnosed later in the first year and the remainder after that. Congenital hyperinsulinism is a condition that causes individuals to have abnormally high levels of insulin, a hormone that helps control blood sugar levels. Infants and children with CH have severe-persistent hypoglycemia. In infants and young children, these episodes are characterized by a lack of energy, irritability, difficulty feeding and may lead to seizures and breathing difficulties. Repeated episodes of low blood sugar can result in permanent seizure disorder, learning disabilities, cerebral palsy, blindness or even death.
Anne and Ed told me from the beginning it is about awareness and early diagnosis.Â In connecting with the CHI community I have gotten to read more stories from families who are committed to doing what they can to raise awareness.Â Â Iâ€™ve received many notes from other families through Instagram and Facebook thanking me for sharing their childrenâ€™s stories with others.Â Â I feel so grateful to be welcomed into their community.
I believe everyone on this team embodies the words on this magnet and I am proud to be a part of it.
Â Keep making a difference every day!
Actually I believe “we owe you” and all of the RFR team. You have made our lives richer and provided us with the opportunity to advocate for our disease and especially early diagnosis, for us this would have made such a difference. This has been such a humbling but rewarding experience, thank you for letting us do this again. â¤ï¸
Thanks for being a part of the Team, so glad to have met you!
I agree with Anne the thanks goes both ways, we as Patients and Fanilies are equally grateful to our runners!