Family working to spare future generations pain of losing child
David and Leanne Lacewell can help you get to know their son Max.
They can tell you he liked Legos, Star Wars and sushi and was nicknamed Little Dude. They can tell you how he comforted his friend when she was nervous about starting school, and encouraged aunts and uncles to eat organic foods. They can tell you how he pronounced certain words and whether he'd laugh at your jokes.
And they can tell you what it feels like to sit in his room, looking at his things, wishing they could give him one more good-night kiss and feel his arms around their necks for one more hug.
Max Lacewell was a loving kindergartner at Welch Elementary School in Naperville when, just before last Halloween, a seemingly slight problem with his eye led to the discovery of a tumor on his brainstem.
The Diffuse Intrinsic Pontine Glioma is an uncommon but fast-growing tumor that took David and Leanne Lacewell's son on the Fourth of July.
The statistics were never in Max's favor. Diffuse pontine gliomas account for 10 percent to 15 percent of all childhood central nervous system tumors, according to Children's Hospital Boston. The median age at diagnosis is 5 to 9 years old, and the median survival is one year. Fewer than 20 percent of children with such tumors survive two years.
The Lacewells, though, are hoping to improve the odds for children with brainstem gliomas. With support from friends and neighbors, they've started the Max Lacewell Foundation to support research into treatment and a cure for Diffuse Intrinsic Pontine Glioma.
David Lacewell tells us more about the foundation's goals.
Q. What is your mission?
A. Our mission is to raise funds to support meaningful research in pursuit of a cure for Diffuse Intrinsic Pontine Glioma, or DIPG.
Q. How do you work toward accomplishing that goal?
A. Through various fundraisers - dinner events, silent auctions, a golf tournament, 5K run, MaxGear merchandise. Additionally, we will work with other charitable organizations to secure grant money.
Q. Whom do you serve?
A. Brainstem glioma patients.
Q. When and why did you start the foundation?
A. The foundation was created in August. My wife, Leanne, and I felt compelled to establish an organization with this very focused goal because there is so little new research being carried through to fruition. Our vision is that we will help create a world in which future generations of children will have better tools to fight this devastating disease and those that are similar.
The foundation is in its infancy; we are working to establish our nonprofit status. We are very fortunate in that Children's Memorial Hospital has set up a Max Lacewell Fund that will allow people to make tax-deductible donations while we work to complete the steps necessary for nonprofit status.
We have an eight-member board of directors, and Stewart Goldman, Max's oncologist, will head up the medical advisory board.
Q. What kind of successes have you had so far?
A. In anticipation of the creation of this foundation, volunteers have raised more than $40,000 in Max's name to be applied directly to our mission. This is a drop in the proverbial bucket as to what it will take to make meaningful steps, but it is quite an accomplishment given there had been no fundraising strategy developed. Our biggest success thus far has been the level of awareness raised for this obscure disease.
Q. What challenges do you face?
A. The most significant challenges any nascent nonprofit faces are public awareness and developing critical mass to propel the foundation and its mission forward. We have to get to a place where people recognize us and our purpose, make it a part of their charitable habit to give to the Max Lacewell Foundation, and develop a financial base that will allow us to help move research projects forward on a year in, year out basis.
Q. What do you wish the community at large knew about the foundation?
A. We simply want people to be aware of our existence and our mission.
Q. How can readers get involved?
A. People should go to our Web site, maxlacewell.com, to learn more about the Max Lacewell Foundation.
<p class="factboxheadblack">Max Lacewell Foundation</p> <p class="News">For details, visit <a href="http://maxlacewell.com" target="new">maxlacewell.com</a>. </p> <p class="News">Donations can be made through the Web site to the Max Lacewell Fund through Children's Memorial Hospital. </p> <p class="News">Proceeds will benefit research into brainstem tumors.</p>