Wikwemikong youth fundraising to attend arthrogryposis multiplex congenital conference

Randee Jawan (centre) with her family at last year’s AMC (arthrogryposis multiplex congenital) conference in Minneapolis. Randee and her family are fundraising for her to be able to attend this year’s conference.

WIKWEMIKONG—Ten-year-old Randee Jawana and her family are fundraising to send her and her guardian to a conference for people living with arthrogryposis multiplex congenital (AMC)—a rare condition that causes congenital joint contractures—in Jacksonville, Florida this July 1 to 5.

Last year, Randee was able to attend the AMC conference for the first time, held in Minneapolis.

“We learned a lot and saw how many children are affected with AMC,” Randee’s guardian Rosemarie Jawana explained to The Expositor. “Randee had the opportunity to meet other kids like her and, most importantly, see that she’s not alone. She also visited with kids her own age and met with very knowledgeable doctors who can help her.”

“It was quite an adventure for all of us, knowing what is out there for her and the technology,” continued Ms. Jawana. “It broke my heart to see the children, but they were all so amazing and full of spirit—they are determined and have their mind set to what they want in life.”

AMC affects one in 3,000 babies born, causing abnormal fibrosis of the muscle tissues which causes muscle shortening. Arthrogryposis means ‘curving of joints’ in Greek.

For Randee, the nonprogressive condition means that she is confined to a wheelchair and unable to operate her hands and feet in the conventional sense.

Despite not having mobility in her hands and feet, Randee has a positive outlook and doesn’t let AMC or her wheelchair slow her down. She is learning to walk on her knees and enjoys swimming, crafts, painting and working on her blog randeesmiles.weebly.com.

Randee and her family have been busy fundraising for this year’s AMC conference, including a roast beef dinner at the Manitowaning Curling Club this Saturday, May 16 from 5 to 8 pm.