Kraig has touched the lives of many different people with his contagious smile and his never-give-up attitude. Although he may be a man of few words, he speaks volumes with his eyes and has taught us how precious life is.
Favorite Hobbies:
Kraig enjoys riding his bike, playing ball, cruising around in the golf cart and relaxing in the hot tub.
Proudest Accomplishment:
Kraig was awarded the “Do The Right Thing” Award in April 2005. He was nominated for this award by his school principal and was presented with the award by the school superintendent at a school board meeting. On November 6, 1999 the Mayor of Edwardsville, Illinois presented Kraig
with an official proclamation naming the day as Kraig Klenke Celebration of Life Day!
MPS Heroes:
Kraig is very proud of his little sister, Chelsey. She is a strong advocate for him and other kids affected with MPS and ML. Kraig also appreciates Dr. Muenzer; who always gets a laugh and smile when Kraig is in clinic for follow-up appointments.
Words of Wisdom:
Kraig would like to share his favorite quote, “Life is not measured by the number of breaths we take, but by the moments that take our breath away.” MPS is a part of our life, but it is not our whole life. Kraig is still able to enjoy many of things his peers do. It’s important for him to be around friends and do normal things, like roller skating, swimming, attending day camp and over night camp. Where there is a will, there is a way. We may have to adjust and modify so that Kraig can participate, but it can be done.
Personal Diagnosis Experience:
Kraig began having health problems around his first birthday when he was hospitalized for pneumonia. He also started with frequent ear infections which eventually led us to an ENT who recommended Kraig have tubes placed. Kraig’s first set of tubes were placed around 18 months of age; however, this still did not solve the constant runny nose and congestion. So when Kraig was 2 years old, we were referred to an ENT at our Children’s Hospital who recommended that Kraig have his adenoids removed. This was to be a pretty simple surgery. However, due to bleeding complications, it turned into quite an ordeal for Kraig. Several tests were run and we were told that Kraig had hemophilia. Eventually, we found out that Kraig did not have hemophilia, but a related disorder called Von Willebrand’s disease, which is also a bleeding disorder.
After Kraig’s second birthday, we noticed that his speech was not developing and that he was beginning to get quite hyperactive and aggressive. His pediatrician at that time didn’t seem to think any of this was a big concern; we disagreed, and insisted that, at the very least, he be referred for speech therapy.
A few months later, about 3 months before Kraig’s 3rd birthday, we were sent to the ER for abdominal bleeding issues. This ultimately led us to a GI doctor at Children’s Hospital. Upon his examination of Kraig, he told us several things about Kraig that no doctor ever had before. He commented on his enlarged liver and spleen, heart murmur and joint stiffness. We eventually were sent for further testing for the bleeding issue, which led to further tests. That day the GI doctor took us into a tiny room at the hospital and first uttered the word Mucopolysaccharidosis. We had no idea what this meant, but we knew Kraig needed further urine and blood tests.
We were then referred to genetics where more testing was done, including a skin biopsy. Eventually we sat with Kraig in another tiny exam room where our worst fears were confirmed; Kraig was diagnosed with MPS II just 3 weeks after his 3rd birthday. Since that time, we have found a new pediatrician and also the National MPS Society where we have been connected to many other families who really understand what life with MPS is like.
