Moyarget mother's appeal for life-changing surgery for 'little princess' Brianna

Moyarget woman Danielle McMullan’s daughter Brianna was born in 2020 with an extremely rare genetic condition called Aicardi Syndrome.

Aicardi Syndrome affects the brain and eyes, and is almost always found in newborn girls, with less than 4,000 cases worldwide.

Little Brianna was born five weeks early and, at only five days old, underwent major surgery for a diaphragmatic hernia.

Danielle explained: “Brianna’s condition affects her in many ways – she has multiple brain abnormalities and eye abnormalities which affect her sight. She may never walk or talk and she is unable to even sit unattended.

"She has a NG (nasogastric) feeding tube that has been keeping her alive for two and a half years and has been on the waiting list since then for her feeding PEG (percutaneous endoscopic gastrostomy) into her tummy.”

A percutaneous endoscopic gastrostomy (PEG) feeding tube is a narrow tube that is inserted through the skin and into the stomach to provide nutrition and medication.

The family has been told that it could be three to four years before the NHS can provide a PEG for Brianna.

“We have faced many problems since having the NG placed with continuous vomiting, feed changes, replacing her tube multiple times per week due to vomiting it up and, the most heartbreaking part, after getting her NG she developed a movement disorder caused by severe pain, bloating, gas and distension to the tummy.

"There are days where Brianna can’t even get out of bed to sit in her chair provided by her Occupational Therapist because she’s in so much pain and discomfort.

"We are missing out on so much of her wee life alongside being able to do things together as a family with our son and Brianna. If we can raise the funds to get Brianna private care for her surgery we could eliminate so much of this by being able to vent her better and take so much pain away from our little girl.”

Over the years, Danielle’s family, the McMullans and Millicans, have raised money for charities close to their hearts such as the cancer ward of Belfast City Hospital, the Epilepsy Society and CORPAL for Aicardi Syndrome sufferers.

"We as a family have never asked our friends, family or strangers for a thing before,” said Danielle.

"But this time we have decided as a family that our baby needs and deserves the life that every other wee child has – a happy life where she’s not vomiting or in severe pain every day with her tummy.

"Having this PEG surgery will help her so much to have that life that she deserves. The McMullan and Millican family will forever be grateful for any small donation that could be made to help our little girl get this life changing surgery.

"She has been through more in her short three years than many have been their whole life. Brianna has spent more than half her life in hospital and we hope that this surgery will let her enjoy her life more and spend more time with her family.”

To donate, go to GoFundMe and search for ‘Help Brianna get the life changing surgery she needs’.