Collin LaVallie

NOTE: The benefit for Collin LaVallie was held June 13, but the fund to help Collin remains open for donations.

Collin James LaVallie, 8, lives in Grand Forks with parents Junior and Heidi, plus three younger brothers. He's had a long health journey that actually started before birth with a rare genetic condition that wasn't identified for several years.

At 4 months old, Collin had lung surgery at Sioux Falls, S.D.'s Sanford Children's Hospital to remove a benign lesion called a congenital cystic adenomatoid malformation (CCAM). The mass posed risks of infection and malignant degeneration.

About two months afterward, he started showing signs of seizures.
Poster for the June 13 benefit for Collin LaVallie
It would be about two more years before physicians at Gillette Children's Speciality Healthcare in St. Paul, Minn., diagnosed Collin with cyclin-dependent kinase-like 5, or CDKL5. It's an X-chromosome-linked disorder that frequently results in seizures that are difficult to control and typically occur daily. CDKL5 also causes severe neurodevelopmental impairment.

Because of his CDKL5 epilepsy, Collin has experienced developmental delays. He's non-verbal, needs continuous care and the use of a wheelchair. 

But he's also a growing young boy, a third grader who enjoys attending Century Elementary School full time.

"Despite letting his seizures get to him, Collin get spoiled with sippy cups of Mountain Dew," according to his mom, Heidi. "Collin is a big fan of the Pizza Ranch for the mashed potatoes and gravy. Collin gets excited when told we're going on a small trip to Devils Lake, N.D., and Langdon, N.D. to visit our family."

Travel for Collin has meant riding in a booster car seat, with an adult buckle to keep him in place. "This option will soon not be safe for him," Heidi said. What he needs to safely travel, she said, is to sit in his wheelchair, strapped down on the floor of an accessible van.

The LaVallies - dad Junior works for Interstate Towing - are trying hard to fulfill that need, having already secured some financial assistance. But to purchase that van, they need more help before they can succeed.

A freewill-offering spaghetti dinner and a silent auction are highlights of a Safe Ride for Collin benefit set for Thursday, June 13, at the East Grand Forks (Minn.) VFW club building, 312 Demers Ave. Save the date for the event, which is set for 5:30 to 8:30 p.m. that evening.

The benefit is sponsored by NDAD through its free Community Fundraisers Program.

All proceeds will be used to purchase an accessible van for transporting Collin. 

You need not wait for the benefit to assist the LaVallies:

Mail donations for COLLIN LaVALLIE to:

c/o Collin LaVallie Fundraiser
2660 S. Columbia Road
Grand Forks, ND 58201

Please make checks payable to NDAD and write "Collin LaVallie" on your check's memo line. Thank you.

Or, you may click the "Donate Now" button at the top of this page and make a donation using your PayPal account or your credit card. If the form gives you an option to add a note, please use it to write "Collin LaVallie" before you submit it. Thank you.

Watch for news and updates on this fundraiser by following NDAD's Facebook and Twitter pages.

Download a copy of the poster HERE.

If you'd like to donate items for the benefit's silent auction, please call Amanda at (701) 610-1737.

Jillian Schaible
Transportation access is a daunting challenge for many people with a wide range of disabilities in North Dakota. Bismarck native Jillian Schaible knows this first hand. She’s taken it upon herself to try and better matters, particularly in her community, through volunteerism and as a watchdog over local public transit issues. Jillian, who ...
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