The grandmother of a 10-month-old Red Deer girl with a rare kidney condition hopes a GoFundMe account will raise $5,000 to help her family.
Codeigh Mae Kelterborn, born with congenital nephrotic syndrome, is in stage 3 renal failure and will require a kidney transplant when she’s about three years old.
“She goes three days a week for four-hour infusions. Yesterday they were down in Calgary to see the nephrotic team,” said Tara Weslowsky, of Red Deer, Thursday.
Born a month premature at Red Deer Regional Hospital Centre, Codeigh Mae’s doctor suspected something was wrong. He previously treated another baby with the rare disease caused by a genetic mutation passed on by both parents.
Codeigh Mae’s parents Valerie Weslowsky and Cahlan Kelterborn both carry the gene, the grandmother said.
“The odds of them having this gene is like one in 100,000 — it’s that rare. She’s one of six born in Alberta in the last 20 years.”
She said usually the disease isn’t discovered until babies are about three months old and by that time they may have learning disabilities and slow growth. Codeigh Mae is doing better because of her early diagnosis.
Codeigh Mae spent about 73 days in hospital in Red Deer and Calgary immediately after she was born. She required several surgeries and when she was finally released from hospital, she still had to return daily for infusions.
Now she gets infusions three times a week, and requires oral medication and injections at home, including antibiotics for a recent infection.
“For how sick she is, she rarely stops smiling. She’s amazing. You would not know she’s as sick as she is. She looks perfectly healthy.”
Her grandmother said so far her doctors are catching problems early so Codeigh Mae is in good condition. But her medication costs $300 to $600 a month, and travel costs have been difficult on her family.
She said Codeigh Mae has five siblings, age 14 to two. Her dad works in management at Red Deer’s north Walmart. Her mom suffered a blood clot after Codeigh Mae was born and also requires costly medication.
Weslowsky said the family was temporarily without medical coverage and hopes to get reimbursed, but some of their daughter’s medication will never be covered because it’s so specialized.
Donations can be made at Caring for Codeigh Mae, at https://ca.gofundme.com/codeigh-mae.