Saskatchewan Family Anxiously Awaits Organ Donor For One-Year-Old Battling Rare Disease

A Saskatchewan family is desperately hoping for an organ donor for their one-year-old who is battling nephronophthisis, a rare genetic disease of the kidneys and liver. Baby Emmet, whose organs are under attack, scratches his body and pulls at his hair, seeking relief from the pain.

His mother, Brittney Skorlatowski, yearns for the organ donation process to move more quickly. “We're waiting to get tested. If we're not a match, then they'll test friends and family. We're hoping the process kind of speeds up so we can get started on this," Skorlatowski told CTV News. The family hopes that testing will begin this fall.

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Thanks to my auntie for creating a go fund me in preparation for transplant. We are still patiently waiting to find out when that day is but when it comes itll be a long road. 🙏❤ god bless all of you 🥰🥰

Posted by Baby Emmet's Journey with Nephronophthisis on Wednesday, August 28, 2019

Given that Emmet was losing much of his hair from tugging at it, Brittney decided to shave off the rest. Aside from pain, both baby and mother are exhausted from not being able to sleep. The one-year-old, who must undergo twelve hours of dialysis a day, needs part of a liver and a kidney transplant. The living organ donations can be taken from an adult. After a match is found, Emmet and his mom will have to travel to Edmonton's Stollery Children's Hospital for the transplant and may need to stay there for up to two years.

A GoFundMe page has been set up to help the family with expenses after they arrive in Edmonton. The funds will also allow Skorlatowski, a single mom, to stay at home and care for Emmet after surgery. So far, the family has raised $1,810 of a $50,000 target. "It's hard on the whole family because you're wanting the best for him. We're just hoping that things move along, and he can have his operations and get home," said great grandmother Joanne Skorlatowski.

The wait is so tough.. you never know what's going to happen in that time 😥

Posted by Baby Emmet's Journey with Nephronophthisis on Wednesday, August 28, 2019

Nephronophthisis, which occurs in an estimated 1 in 50,000 newborns in Canada and 1 in 922,000 in the United States, is a disorder that affects the kidneys. It is characterized by inflammation and scarring that weakens kidney function, leading to increased urine production, excessive thirst, weakness, and extreme fatigue. Patients also develop fluid-filled cysts in the kidneys and suffer from anemia.

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The disorder eventually leads to end-stage renal disease (ESRD), a life-threatening failure of kidney function that occurs when kidneys are unable to filter fluids and waste products. Nearly 85 percent of all cases of nephronophthisis are isolated, meaning they occur without symptoms. Patients can also develop liver fibrosis, heart abnormalities, or reversal of the position of one or more organs inside the body.

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