Mayo family raise funds for child with rare disease

A Mayo family has set up a GoFundMe to raise money for one-year-old Kayla, who requires treatment for a rare disease.

During her pregnancy, Kayla’s mother Elisha experienced complications, which led to frequent hospital appointments. 

In June 2023, Kayla was born, and spent a month in the special care baby unit due to poor weight gain and feeding issues.

At three months old, Kayla developed an oral aversion which led to a Nasogastric tube being inserted for feeding, and from then on the newborn had regular hospital appointments.

In May 2024, Kayla developed a serious infection and was transferred to Crumlin Children's hospital, where she was diagnosed with a life-threatening extremely rare condition. 

Her condition causes her immune system to be suppressed, placing Kayla in a precarious position with a high risk for dangerous infections, cancer and mortality. 

The only known cure for Kayla’s illness is chemotherapy and a bone marrow transplant. If Kayla does not have the transplant, she will have a much shorter life expectancy.

However, this treatment is not available in Ireland, so Kayla will be having this treatment in The Great North Children's Hospital in Newcastle. 

The Ballina family will travel to Newcastle on September 3 for the transplant assessment, which involves numerous tests to ensure Kayla is fit for transplant.

Kayla will then receive an expected date for the treatment and when the date is scheduled, she will be admitted to the hospital in Newcastle for the transplant which involves chemotherapy, blood infusions, the transplant and aftercare.

The treatment in Newcastle is expected to last several months, causing a large financial burden to the family, as Kayla’s parents Kevin and Elisha will be unable to work while they are in Newcastle.

Kayla’s grandmother and Elisha’s mother, Denise Murphy, set up a GoFundMe page in order to raise money to help the family through this tough time.

For more information, and to donate, see the GoFundMe page.