Holsworthy toddler Alexis Gordon left with weeks to live after shock cancer diagnosis

Parents of a toddler in Sydney’s southwest have been given the heartbreaking news their daughter has only weeks to live and are doing everything they can to make her remaining days special.

South west Sydney locals are rallying behind a toddler and her parents after the three-year-old was diagnosed with an untreatable cancer, giving her just weeks to live.

Alexis Gordon is only three but has already suffered through so much, after being diagnosed with rare skin condition Epidermolysis Bullosa (EB) hours after being born.

The Holsworthy toddler was born with de-gloved feet, blisters in her mouth and missing skin on her back, hands and stomach meaning her parents, Alarna and Harley Gordon, were unable to even touch their newborn.

Ms Gordon told the Macarthur Chronicle it was “evident something was wrong” from the moment she was born as her baby girl was suffering from “wounds that looked so painful”.

Alexis Gordon was diagnosed with rare skin condition Epidermolysis Bullosa (EB) hours after being born.

At just three hours old Alexis was admitted into intensive care and “bandaged up like a little mummy”.

“We couldn’t even touch or hold our new baby, the baby we went through multiple rounds of IVF to have,” Ms Gordon said.

It wasn’t long until doctors revealed Alexis was diagnosed with EB and would spend many years of her life bedridden and in hospital, crushing Mr and Ms Gordon.

“We have never cried so many tears, having a baby should be joyful and an exciting time of your life but for us it was a scary and unknown journey,” Ms Gordon said.

The young parents had no idea whether they would be able to “care for a child with such high needs” but did everything they could for Alexis.

She was transferred to Sydney Children’s Hospital where she was treated by doctors, nurses, dietitians and dermatologists.

“They explained EB to us and gave us so much hope … after the emotional horror of the last 24 hours, all we needed to hear was everything would be okay and this is exactly what happened,” Ms Gordon said.

Alarna Gordon got the heartbreaking news her daughter has untreatable cancer.

Harvey Gordon pictured with Alexia.

However, just one week after being born Alexis was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (RDEB), the first in her entire family to have the rare skin condition.

The couple were told Alexis would have to have her dressings changed daily her entire life, her fingers and toes would web due to the injuries, she would lose her finger and toe nails due to blisters and suffer excessive scarring.

Alexis also finds it difficult to swallow normal foods as it can cause blisters in her mouth and throat.

The young parents felt blessed to have a kind support network to help care for Alexis, but deep down just wanted to be at home with a healthy baby.

“We relied so much on the nurses and doctors we never thought we could do this on our own, but we were determined to be the best parents and provide her the best care she needed to live her life to the fullest,” Ms Gordon said.

Alexis was bandaged up from the moment she was born.

“Every day we are constantly checking her body for new blisters or skin injuries, during every nappy change we prayed that her clothes and nappy have not damaged her skin.”

“Every time she picks up a toy we cringe. This is our life. Alexis is so brave, she is always smiling and laughing. How can we be upset when she is so happy?”

Parents who have children suffering from EB have to think differently, Ms Gordon said, analysing how to pick her up, what toys to let her play with, her clothes, cutlery, prams, highchairs and even mattresses.

While Ms Gordon acknowledged life as an “EB parent” was hard, nothing compared to the news the family received on May 19.

“Seven weeks ago Alexis became a big sister … 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,” Ms Gordon said.

Alexis became an older sister just seven weeks ago.

Alexis adores her little brother.

“But two weeks ago her future was taken away from her.”

While changing Alexis and getting her ready for daycare, Ms Gordon noticed a blood clot in her nappy and assumed it was due to EB but decided to check with doctors.

The couple were told to get tests done and spent hours in the emergency room with Alexis.

“Scans came back showing a large tumour on the right kidney expanding up the main ventricle to the right side of her heart,” Ms Gordon said.

In addition to the tumour on her kidney Alexis also has a 6cm tumour in her heart, with some masses also on her lungs.

Alexis’ parents were told the three-year-old has only weeks left.

Alexis was diagnosed with stage four renal cancer otherwise known as Wilms’ tumour – a rare kidney cancer primarily affecting 1 in 10,000 children.

Mr and Ms Gordon made the heartbreaking decision not to go ahead with any treatment after being given information and considering all their options.

Doctors told the family as the tumours are so aggressive she only has “a few days to a few weeks” left.

The couple are now just trying to make as many memories with their gorgeous little girl.

“We have taken Alexis home for family and friends to enjoy time with her and give her a chance to be around all her loved ones,” Ms Gordon said.

“We are just taking each day as it comes. Unfortunately we don‘t know if it’s days or weeks or even months that we have left with our little Lexi.”

The couple are making memories with their three-year-old daughter, taking photos and videos of their time together.

The couple are making memories with their three-year-old daughter, with a GoFundMe set up to help.

“Alexis has so much love and support from all our family and friends,” Ms Gordon said.

“We are crushed Kobi will not grow up with amazingly strong and beautiful big sister, all Alexis ever wanted was to have her baby brother here – she waited so long.”

A GoFundMe has been created, generating more than $13,000 for the young family in just three days.

Ms Gordon has been overwhelmed with the support, saying it’s “amazing” to see everyone come together for her little girl.

“We are forever grateful for the support we have gotten over the last 2 weeks from our family, friends and thousands of people through social media,” she said.

“Your words, kind gestures, visits and food delivery have not gone unnoticed.”