Hamilton neighbours hosting fundraiser for Cena Hermus, a 7-year-old with a rare disease

A community on the Hamilton Mountain is getting together to raise money for their young neighbour — a 7-year-old girl battling a rare disease.

When Katie Tessier read about Cena Hermus's rare disease and expensive treatment, she thought, "we have to do something,," she recalled, speaking to CBC Hamilton.

"We can't just sit back and not do something," she said. "We want to show [them] that we're a strong community, and if we can help out each other when someone's in need, we're going to do that."

Cena was diagnosed with proopiomelanocortin (POMC) deficiency at age two, a rare, life-threatening disorder that causes severe obesity at an early age.

Tessier gathered neighbours of the area and reached out to nearby businesses, many of whom came through to support, she said. 

The Saturday event will have a yard sale, bake sale, barbecue and several raffles with prizes including Forge FC tickets.

The treatment Cena needs — a medication called setmelanotide — is at least $300,000 during the first year, according to both her family and McMaster Children's Hospital, which has been providing some of her care. 

Her family, who arrived in Canada as refugees after fleeing Syria, can't afford the cost.

'She deserves to be a kid'

Cena's story was first reported by CBC Hamilton in mid-March. Tessier, who lives three houses down from the family,  told them she was going to plan "something to raise some money."

"[The family] was very, very grateful, full of smiles," she said.

She's known them for around a year, often waving at them and has had limited interactions due to the language difference, but she had no idea what the family was going through, she said. 

CBC Hamilton visited Cena and her family earlier this year. 

The little girl had a shy demeanour and timid smile. She likes to hold onto a doll, which she says is her favourite, and loves playing with her little sister, Fatima, but her condition makes her feel tired and unable to walk most of the time, her father Ibrahim Hermus said. She's unable to attend school most days, he added.

"We have come so far in our medical field that to me, I feel like there should be something they can do and not wait for payment. So in my eyes ... I just feel like she deserves to be a kid," said Tessier.

Rania Mohammed is a social worker with Mishka Social Services, an organization that has been advocating for Cena. Speaking on behalf of the family, she said their situation has only "worsened" in recent months. 

"Ibrahim is under immense stress and recently underwent cardiac catheterization," she said, adding he's also struggling with depression and has chronic back pain.

"Cena's health is rapidly declining," said Mohammed. "She is in constant, unbearable pain and often screams through the night as she is unable to sleep. Witnessing her suffering has been devastating for the entire family."

Ibrahim is frustrated over the family's current housing situation, she said. They live in a two-storey home where bedrooms are upstairs, and they have to carry Cena up and down daily. The family is on a waitlist for different housing but have yet to hear back.

"He believes their case should be prioritized due to the urgent need for a home with a main floor bedroom to accommodate Cena's care," Mohammed said.

Fundraiser starts 9 a.m. Saturday

Around eight of Cena's neighbours have come together to plan the fundraiser, and many others have offered to help on the day of the event. 

Several businesses have contributed to Cena's fundraiser, including Chris & Jenn's No Frills on Rymal Road East, a nearby Pioneer gas station, Zerky's Fine Foods, and Hamilton's own soccer team Forge FC, which donated two tickets for the raffle.

"They were our first donations," said Tessier. "When we reached out to them and told them Cena's story, there was no hesitation."

The raffles will include gift cards, the Forge FC tickets and a fire pit, she said.

The fundraiser starts at 9 a.m. and will run at 14 Derby Street until 1 p.m.