One teen's story of music, perseverance and care at CHEO

Living with Down syndrome brings challenges that require an entire team of medical professionals. For Helen Nuttal, her journey has involved a lifetime of appointments at CHEO, where she has also learned the gifts of perseverance.

She sings to distract from her pain or the discomfort of medical treatment while living with Down syndrome.

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"It is the greatest feeling, performing for my family," said Helen, who is 16 years old.

"Singing works for Helen when she has something scary. Whether it be IVs or if it's blood work or just anything that's bothering her, she sings and we have a little playlist on the phone and she uses music and she sings to get through it," said Andrea Brett, Helen's mom.

Nuttal has been in and out of the hospital her entire life. She was born by emergency C-section two months before her due date, spending weeks in the neo-natal intensive care unit.

Premature and jaundiced only days after coming into the world, Helen needed emergency bowel surgery at CHEO.

"That was a very long, scary surgery. And it was it was really difficult handing her over when I'd barely held her," said Brett.

It only marked the beginning of a lifetime of complications. Helen had severe reflux and holes in her heart. The family from Perth stayed at Ronald McDonald House to be close to CHEO.

Helen is a social butterfly, and she quickly won the hearts of those who treated her.

"She had all this stuff going on and she'd had surgery, she was still engaging with everybody as they came in. And it was just really when they said she's a social butterfly, that's what the nurses called her," said Andrea.

Helen has accessed more than ten clinics at CHEO, including the Down syndrome clinic, a one-of-its-kind in Canada.

"Children with Down syndrome have a lot of health issues," said Dr. Mary Pothos, CHEO's Down Syndrome Clinical Director. "Every system can be affected by Down syndrome, so their eyes, ears, teeth, heart, lungs, gastrointestinal system, bones, and skin."

The hospital booking teams helped Helen's family coordinate appointments and medical testing while social work staff set her parents up to access specialized government services. CHEO made sure Helen grew up with the medical care she needed to be as healthy as possible.

"Helen is special. She is quite capable. She's smart, she's sassy, and she's gone through a lot of health issues," said Dr. Pothos. "But to talk to her, you wouldn't know it. She presents like any other teenager of her age at 16. She's very resilient and she's quite capable. And I think, again, helping her with her health issues has, you know, enabled her to maximize her potential."

Despite her challenges, Helen perseveres and inspires those around her. Her family, sister, loved ones, and especially those that she connects with while at CHEO.

"She was just so happy to get to see her friends and come back to CHEO," said Andrea. "I think that's very telling that it's such a positive experience, even through all the difficult times. The bottom line is she wants to be here and see her people."

"They are always kind to us and we are like a CHEO family because in 16 years, I have been here because I have a lot of medical issues for me," said Helen.

It's programs like the hospital's donor funded therapeutic clown that makes a world of a difference.

"She's amazing, she's like a superstar here," said Zedd the Clown.

Helen knows that she can depend on those at CHEO to help her persevere, even when she goes through health set backs or challenges. 

The 41^st CHEO Telethon continues all week on CTV News Ottawa, CTV Morning Live and Newstalk 580 CFRA, with the grand finale on CTV Ottawa Saturday from 4 p.m. to 7 p.m.

You can make a donation to the CHEO donation online at www.cheotelethon.com or by calling 613-730-CHEO (2436).