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29th Feb 2024

Rare Disease Day: Baby Ethan’s fight against Hyper IgM Syndrome

Jody Coffey

rare disease day

Today is Rare Disease Day

It’s a day of observance held to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with a rare disease and their families.

Over 300 million people worldwide live with a rare disease, according to Rare Disease Day.

Sadly, one of those is Baby Ethan, a little boy who has recently been diagnosed with an Immune disorder called Hyper IgM Syndrome, a rare one-in-a-million life-threatening disease.

Hyper IgM Syndrome is a disease which puts a person at high risk for dangerous infections, cancer, and mortality.

The only known cure for the disease is chemotherapy and a bone marrow transplant, which isn’t available in Ireland.

Support Baby Ethan

A GoFundMe has been set up to help Ethan’s parent, Jacqui and David, finance the treatment in Newcastle and support Ethan’s fight against Hyper IgM Syndrome.

The fundraiser has a goal of €60,000 and has already surpassed €40,000.

At the Great North Children’s Hospital in Newcastle, he will undergo transplant assessment, which involves several tests to ensure he is fit for treatment.

“This is where we need your help in supporting David, Jacqui and the children through the financial burden

Fiona Kenny Deirdre Tierney

Ethan’s siblings, Rían, Cadáin, Freya and Bria have all been tested to assess if they are a suitable donor match, which, unfortunately, they were not.

The family are now in search of a suitable donor.

To help, Ethan’s aunt, Fiona Kenny Deirdre Tierney has called on the generosity of the public in the hopes that she can raise funds for Ethan and his family to facilitate his treatment.

Donations will go towards Ethan’s treatment

The young boy is due to receive a date for a transplant over the coming weeks or months, which will see him admitted to the hospital in Newcastle for the duration of the transplant process.

This process involves chemotherapy, blood transfusions, and the transplant, along with aftercare to ensure engraftment, and can last anywhere from six to eight months.

“This is where we need your help in supporting David, Jacqui and the children through the financial burden this will have whilst moving the family to Newcastle to give Ethan the best chance of a normal life,” Fiona writes on the fundraiser.

Both Jacqui and David, who both work as nurses, will be unable to work during this time and Fiona says donations will ease the financial burden during this ‘unimaginable time’ for them.

To support Ethan and his family, you can donate here.

To help spread awareness and support the fundraiser, Fiona has asked that it be shared widely online and with friends and family.