Alexis was born on March 26, 2018, and it was immediately apparent that something was wrong.
She arrived with degloved feet, blisters in her mouth, and missing skin on her back, hands, and stomach. Initially, the nurses reassured Alarna, Alexis’s mum, that it was normal for overdue babies to experience skin peeling. However, quite quickly, it became clear that this was significantly more than just normal skin peeling – Alexis had painful wounds all over her body.
At just three hours old, Alexis was admitted to the NICU ward.
Alarna and Harley were unable to touch or hold their newborn, the precious baby they had longed for after enduring multiple rounds of IVF.
In the NICU, the doctor informed them, “We believe Alexis may have a rare skin condition called Epidermolysis Bullosa (EB). She may be bedridden for the rest of her life, and you’ll likely spend many more months in the hospital.” The news completely shifted the initial joy of having a much-longed-for baby to a sense of uncertainty, fear and grief.
What is Epidermolysis Bullosa (EB)?
From Children’s Health Queensland; “Epidermolysis bullosa (EB) describes a group of rare genetic blistering disorders affecting the skin. People with EB have a fault in their DNA which stops the production of proteins. These proteins are used to hold the layers of skin together and make it strong.EB affects the skin and internal organs, and is a genetic lifelong condition that cannot be cured.”
Children who suffer from the disease are often called “butterfly children” as their skin is as delicate as butterfly wings.
Alexis was transferred to Sydney Children’s Hospital.
Alarna and Harley were introduced to a team of doctors, nurses, dietitians, and dermatologists. A week after her birth, Alexis was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (RDEB), marking her as the first on both sides of the family to battle this condition.
Whilst in hospital, Alexis contracted blood, urine and skin infections.
The medical team outlined the lifelong care Alexis would require. She would need her dressings changed daily, and due to repeated injuries, her fingers and toes might web. Additionally, she would likely lose her fingernails and toenails because of blisters forming under the nail beds. She would also suffer from excessive scarring across her body. She would also find it challenging to swallow everyday foods, which may cause blisters in her mouth and throat.
Any slight friction against Alexis’s delicate skin produced sores likened to living with severe burns. “Despite being incredibly gentle, we couldn’t avoid causing some blisters,” says Alarna.
The challenging path ahead.
Armed with support and knowledge (and reassurance from Alexis’ medical team), Alarna and Harley felt prepared to face these challenges head-on.
“Me and my husband were so determined to make sure that we were able to care for her outside of hospital and give her the best chance at life that we could with what she has.”
“Parents with EB babies have to think differently,” Alarna says.
“The toys she plays with, the clothes she wears, the spoons she eats with, car seats, prams, highchairs, mattresses and bottles all potentially could cause damage.”
“We had to expect that family and friends were going to injure Alexis’s skin; we had to learn not to blame people for causing more damage; we wanted to let Alexis live a somewhat ‘normal’ life even if it meant she would be in pain because we couldn’t wrap her in cotton wool and protect her forever.”
“Newborns discover the world and learn by exploring with their hands. Alexis’s were bandaged until she was seven months old, so she was a little behind.”
Fast-forward to 2021, Alexis became a big sister to little brother Kobi.
“We didn’t know what to expect for the future, and we didn’t know if she would get worse or if it was a mild case of EB,” Alarna said.
Just weeks after the arrival of her little brother, the family received devastating news.
While changing Alexis and getting her ready for daycare, Alarna noticed a blood clot in her nappy. She assumed it was due to EB but decided to check with doctors.
Alexis was sent to the emergency department for urgent tests.
Scans came back showing a large tumour on the right kidney expanding up the main ventricle to the right side of her heart. In addition to the tumour on her kidney, Alexis also has a 6cm tumour in her heart. She also had some masses on her lungs.
Alexis was diagnosed with stage four renal cancer, otherwise known as Wilms’ tumour. This rare kidney cancer primarily affects 1 in 10,000 children.
After being given information and considering all their options, they made the heartbreaking decision not to go ahead with any treatment. They were told Alexis would only have days to weeks left. So, Alarna and Harley focused on making as many memories as possible with Alexis.
Sadly, Alexis passed away in June 2021 at age 3.
Alarna and Harley have worked hard to honour their beautiful Alexis, raising awareness of EB and funds for affected families. They want the support they had during their time with Alexis to be available to all families battling EB.
DEBRA Australia is a not-for-profit organisation that tirelessly supports those living with epidermolysis bullosa (EB), a group of rare skin blistering diseases.
“DEBRA work extremely hard and is dedicated to spreading awareness of EB and its impact on families just like ours. They care about every individual who has this terrible disease, we are not just a number to them. I love that DEBRA know our story, they know us, we are not just another family with EB to them. It’s like we are part of a bigger family and community.”
October 25th—31st is EB Awareness Week, and this Sunday, October 27th, is DEBRA’s annual “Walk For Wings” event. You can donate to Alarna and Harley’s fundraising efforts here.
