Though development continues to come with challenges, little Sophie Emmerson is thriving.
The one-and-a-half-year-old Niagara Falls girl was born with two genetic conditions, CHARGE syndrome and Russell-Silver syndrome Type 4.
CHARGE syndrome affects many areas of the body. The abbreviation is for several of the features common in the disorder: coloboma, heart defects, atresia choanae (also known as choanal atresia), growth retardation, genital abnormalities and ear abnormalities.
Russell-Silver syndrome Type 4, meanwhile, is characterized by small birth size.
Robyn Emmerson said her daughter Sophie is undergoing physio and occupational therapy as she struggles to balance. She’s also starting to learn sign language, as she’s profoundly deaf.
She also has a feeding tube.
“She’s a complex gal, but she’s living her best life,” Emmerson said.
Now living at home with mom and dad, Brett, Sophie spent nearly the first year of her life at McMaster Children’s Hospital in Hamilton.
Though development continues to come with challenges, little Sophie Emmerson is thriving.
The one-and-a-half-year-old Niagara Falls girl was born with two genetic conditions, CHARGE syndrome and Russell-Silver syndrome Type 4.
CHARGE syndrome affects many areas of the body. The abbreviation is for several of the features common in the disorder: coloboma, heart defects, atresia choanae (also known as choanal atresia), growth retardation, genital abnormalities and ear abnormalities.
Russell-Silver syndrome Type 4, meanwhile, is characterized by small birth size.
Robyn Emmerson said her daughter Sophie is undergoing physio and occupational therapy as she struggles to balance. She’s also starting to learn sign language, as she’s profoundly deaf.
She also has a feeding tube.
“She’s a complex gal, but she’s living her best life,” Emmerson said.
Now living at home with mom and dad, Brett, Sophie spent nearly the first year of her life at McMaster Children’s Hospital in Hamilton.
Though now living at home, Sophie Emmerson still returns frequently to McMaster.
When she was born, her nasal passage was blocked, and she required emergency intervention. She was intubated for six weeks and then had surgery to open her nasal passages.
In order to be at her side, Robyn and Brett stayed at Ronald McDonald House (RMH), just a short walk away.
Emmerson said it would have been unimaginable having to commute to Niagara Falls every day.
“We were at the hospital by her side pretty much every day, and we had some pretty scary days to be honest,” she said. “And I don’t think mentally or emotionally we would have been able to do that drive home. So just knowing we could walk five minutes back to Ronald (McDonald House) and crash there and be close to our daughter and be at her bedside all the time, it was a blessing.”
While Brett was able to take a leave of absence from work for the first couple of months, he eventually had to return to his job. Robyn, on the other hand, stayed at RMH for nearly 320 days, returning home only rarely for breaks. She said it was a like a home away from home, with caring staff she got to know and other families going through similar situations.
The Emmerson's are just one family whose lives have been helped by RMH.
Ronald McDonald House Charities South Central Ontario has one house and two rooms at the hospital, serving families from roughly 100 communities. Across Ontario, families save more than $23 million a year in out-of-pocket expenses, such as accommodation, meals and travel.
To make this possible, McDonald’s franchisees across Canada will be holding McHappy Day on Wednesday, May 8. Throughout the day, a portion of proceeds from all McDonald’s menu items sold will be donated to Ronald McDonald House Charities.
While Sophie still has to go McMaster every now and then, she’s been living at home since September.
“Her transition to coming home was pretty seamless,” Emmerson said. “She’s just been thriving.
“She’s just been amazing; she’s been a champion through this whole thing.”
[Original article posted on NiagaraThisWeek.com on April 29, 2024. All credits to Niagara this week.]
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