helps son, others
October 4, 2007
By MARIE WILSON Contributor
Max Randell, 9, of Buffalo Grove has Canavan disease,
but his family believes he is just as normal as any kid
he was diagnosed with the degenerative brain disorder at
4 and a half months of age, Max enjoys some of the same
activities as his 5-year-old brother Alex: horseback
riding, baseball and boating.
"Clearly he's like a regular kid in a wheelchair,
basically; just his body can't do what he wants it to
do," his mother, Ilyce Randell, said.
Of course, few children have proclamations issued in
their honor by two different village governments on the
On Sept. 10, both the villages of Palatine and
Buffalo Grove presented Canavan Research Illinois with a
proclamation proclaiming the month of October as Canavan
Disease Awareness Month in honor of Max's 10th birthday
this month. Representatives of this charity accepted the
The villages of Deerfield and Northbrook also have
created proclamations in Max's honor.
The proclamations mentioned the ninth annual charity
ball that is being held Oct. 13 at the Hyatt Deerfield
in honor of Max's birthday.
Fighting the disease
Max's body does not perform as he would like it to
because Canavan disease progressively decreases the
brain's ability to respond to nerve stimuli.
To fight the disease affecting her son, Randell and
Max's grandmother, Peggy Shapiro-Nyeholt, founded
Canavan Research Illinois immediately after his
Randell said the foundation works to connect and
inform families of Canavan children and raise money for
research. She strives to achieve those goals by meeting
with politicians and posting information on the CRI Web
site at www.canavanresearch.org.
"She (Ilyce) is really into research and political
issues," Max's father Mike Randell said. "She really
puts herself and CRI out there and networks with local
politicians to move policy along."
Research completed by CRI has resulted in new gene
therapy treatments and medicines, and improved the
quality of life of dozens of children with Canavan
disease. Max is just one of them.
"He's a medical pioneer," Ilyce said. "He's always
been on the forefront, and that's kind of because of
what we're doing; I mean we want to save these kids."
Based on the results of Max's MRI, the gene therapy
he first received at 11 months old -- and again at 3
years old -- has helped.
"He's not baseline for Canavan disease," Ilyce said.
"His mind and social skills and everything like that are
that of a normal 10-year-old."
Linnea Edstrom of Arlington Heights, Max's one-on-one
aide, has learned to understand Max's method of
communication, in which he moves his eyes, face and body
in subtle ways to express himself.
"He's cheerful and easy to get along with. He doesn't
fuss and he likes a lot of activities," Edstrom said.
"He's happy because the people around him are happy."
Edstrom is in her second summer watching Max at his
home. This summer, the ranch-style home includes a new
addition, courtesy of the "Live with Regis and Kelly"
show's Mom's Dream Come True Contest.
The Randells were chosen as one of the winners of a
room renovation by HGTV's Monica Pedersen, who hosts the
show "Designed to Sell."
The Mom's Dream Come True Contest became the second
sweepstakes the Randell family has won after being
entered by Shapiro-Nyeholt. Ilyce was also victorious in
last year's Diet Rite Zero Boundaries Woman Contest
after receiving a nomination from her mother.
"It's helpful to have another space," Ilyce said of
the new porch-turned-great room. "Because this is it, we
don't have a basement."
With the renovations complete, Max can now access the
room and the backyard patio from his wheelchair with the
same ease of the rest of his family.
And as Max's family members go about their daily
routines, fighting Canavan disease through the funding
and networking efforts of CRI, he fights it during
therapy sessions for more than four hours a week.
"Alex and Max go horseback riding together," Mike
said. "Max does horseback riding therapy and they let
siblings come too."
Max also completes speech, occupational and physical
therapy and has played buddy baseball through the
Buffalo Grove Recreation Association for the past two
"He has a motorized wheelchair, and the buddy helps
to make sure he went to the right base," Ilyce said.
"Because the kids, all of them in chairs, they think
it's hilarious to just go all over the field."
Max also enjoys riding on his family's pontoon boat
down the Fox River, proving that despite having a
disease, he is a normal kid.
"I don't think that would have been possible if we
had just let the disease run its course," Ilyce said.
"The life expectancy for Canavan disease is seven to 10
years, but he's going to be 10 in October, and he's
going to be here for a long, long, long, long time."
The Canavan Charity Ball will be held Oct. 13 at the
Regency Ball Room of the Deerfield Hyatt Hotel, 1750
Lake Cook Road. Hors d'oeuvres and the silent auction
preview will be at 6 p.m. The Dinner and raffle will be
at 7:30 p.m. Dancing will last until midnight. For
tickets, call (800) 833-2194.
The featured speaker will be Paola Leone, Ph.D. Leone
is an associate professor in the Department of Cell
Biology, at University of Medicine and Dentistry of New
Jersey School of Osteopathic Medicine in Stratford, N.J.
Leone and her team are world leaders in researching
Canavan disease as well as many other areas of
biomedical research related to diseases of the brain.
Canavan Research Illinois can be reached at P.O. Box
8194, Rolling Meadows IL 60008-8194; (800) 833-2194;
firstname.lastname@example.org and www.canavanresearch.org and