Sooke teens come to the aid of little Maysa

The Sooke Youth Council is organizing a benefit dance

Baby Maysa is struggling with cystic fibrosis.

The Sooke Youth Council organized a 24-hour fundraiser for April 4 to help a six-month-old baby fight her battle with cystic fibrosis.

Emily Percival, of the Sooke Youth Council, said the group of teens arranged a day long fundraiser for baby Maysa called Medicine for Maysa, a Day in Sooke for Charity.

The event will include a fundraiser dance, where admission sales and profits from games and concession will be donated to Maysa and her family. Various local businesses are also participating and have agreed to donate a certain amount of their sales from the same day to the cause.

“I think if we can try to alleviate some of the financial worries, I think it will give them a chance to enjoy being a family,” Percival said, adding the end goal is to raise at least $5,000.

Maysa is a brown-eyed, and chestnut haired baby with a “sensitive” and “sweet” nature, according to her mother Sarah Milligan.

At only three and a half weeks old, Maysa was diagnosed with cystic fibrosis — a fatal genetic disease, where mucus builds up in the lungs and digestive tract making it difficult to breathe and ingest nutrients. As a result, Maysa endures two nebulizer treatments, administration of different medications and physiotherapy sessions daily.

“She tolerates her therapies very well. She’s a tiny baby and she’s gotta go through nebulizer treatments with medicines going into her lungs 20 minutes at a time,” Milligan said.

To date, treatments, immunization, medication and equipment have amounted to $12,000, 75 per cent of which has been covered by provincial programs. The family, however, is responsible for the remaining $3,000.

“Financially there’s just no way we would’ve made it through the last few months if not for the support we’ve received from the community and various charities,” she said.

With two other kids aged four and six, Milligan has been unable to return to work due to the time and care required by Maysa’s condition. Milligan said the loss of her income has caused additional financial strain, as her husband is now the sole provider with no extended health care plan.

“In the evening I’m sterilizing equipment and preparing her meds, it’s just too much right now to even think about going back to work,” she said. “It’s hugely difficult for me to go back to work and replace my income.”

Costs will continue to increase as Maysa will require more advanced treatment when she gets older. The resilient baby is currently prescribed four different medications and six different vitamin supplements.

The family recently relocated from Sooke to Courtney for work, but the good will coming from Sooke is not long forgotten.

“The support from the whole Sooke community has been overwhelming. Knowing people care enough to help our little girl in our time of need has been very comforting to us,” she said. “It’s been humbling and amazing and brought me to tears time after time.”

Despite all the challenges in her young life, Milligan said Maysa is no different from any other baby. Although underweight, she’s met her developmental milestones, recently discovering her toes, rolling over and babbling.

“She loves watching her older siblings run around,” Milligan said with a soft laugh. “She laughs and giggles at them.”

The dance will take place at Edward Milne Community School on April 4 from 7-10 p.m. It will be circus themed and is open to all students from Grades 8-12. Admission is $10.