Chatham stepping up for girl after life-altering surgery

It’s difficult to know where to turn when tragedy changes your life in an instant.

For 12-year-old Ebony Vandenbogaerde of Chatham, learning to live paralyzed from the waist down is her new normal, and finding the supports and equipment she needs to have any quality of life is her mom, Maria’s new mission.

Surviving 10 hours of surgery in London in May to remove a rare type of tumour in – not on – her spine, Ebony contracted an infection which has kept her in the hospital in London, where Maria is with her every day to help her eat, get dressed and put in her catheter.

Thanks to Ronald McDonald House in London, Maria’s expenses to stay with Ebony were only $10 per night, but when she moves soon to the Holland Bloorview Rehabilitation Hospital in Toronto, the cost per day to stay with her daughter will be $65 with no food or parking covered. And she may need to be there for six months to a year.

“They figured out I have come up with $6,000 just to stay there and that doesn’t include going back and forth,” Maria noted.

Add in the need for new accessible housing, vehicle and a wheelchair, and you can understand why Maria is feeling overwhelmed. A mother of eight, including Ebony and a 10-year-old son who is still at home, Maria is just trying to get through each day and help Ebony with her feelings of anger and sadness at the loss of her mobility.

“She is very angry most days but has her up days and down days,” Ebony’s mom said. “It’s coming at her all at once.”

Maria said her adult children want to come and help, but have jobs and kids of their own to take care of in Chatham.

A dancer at All That Jazz in Chatham, Ebony was an active teen who also enjoyed flag football. The tumour in her spine was finally discovered after several trips to the Chatham hospital in the wake of two falls that left Ebony unable to walk properly.

Maria said Chatham’s new pediatric doctor took her condition seriously, and ordered several tests that detected the tumour, which was between vertebrae and being fed by blood vessels surrounding it.

Transferred to London, Ebony’s surgery was difficult as the vascular nature of the tumour meant trying to remove it would cause a great deal of bleeding. After two surgeries in 10 hours, the doctors were able to remove it, as well as two of her vertebrae which were replaced. Despite their efforts, Ebony was left with no feeling from the waist down.

The infection she developed after the surgery has delayed her move to the rehab hospital in Toronto until July 31.

This situation has been devastating to her family, Maria said, and she is torn between being with Ebony in London, with her son in Chatham and trying to figure out where the money will come from to pay for everything Ebony needs. On disability support herself, Maria doesn’t have many resources to pay for her lodging, let alone a new, probably custom, wheelchair.

“It’s life changing. It’s turned my life upside down. Basically, it’s a big separation. I had to ask one of my son’s siblings to take care of him. It’s traumatic for him and for Ebony and me, I feel like I’m being torn apart. I have to be with Ebony 24/7 and I don’t have any support up here,” Maria said of the situation.

A GoFundMe page has been set up by her dance family at All That Jazz, thanks to company owner Lisa Lester, and so far, $1,030 has been raised.

“Her family will need time off work during this time and will need financial help right away in order to be by Ebony’s side 24/7. We all need to do whatever we can to encourage this young girl to not give up hope. Please donate to the Vandenbogaerde Family and help them during this very challenging time,” Lester wrote on the main page of the fundraising site for Ebony.

Lester said she has known the Vandenbogaerde family for about 10 years through the kids in dance, and when she heard about Ebony’s illness just before the year-end recital this spring, she rallied ATJ families to help out.

“I sent e-mails to the ATJ families and set up the GoFundMe page. We are also collecting pop can tabs to raise money for a wheelchair. Parents have been bringing in Ziploc bags full of them,” Lester added.

Emotional and financial support is what Lester hopes to provide to the Vandenbogaerde family, and anyone wanting to donate can go to https://www.gofundme.com/help-ebony-vandenbogaerde.

Maria said organizations such as the WISH Centre in Chatham are planning a bake sale and car wash, and she has heard another group might be planning a steak dinner. She appreciates all the help friends and complete strangers are offering so she can concentrate on being there for Ebony.