Remembering Xantha Maree

Trigger warning - death of a baby

Hi, my name is Melanie Kilo, and I'm fundraising in memory of my daughter, Xantha Maree for her 18th birthday. You can donate here.

Xantha was born on the 15th February 2007, and flown to Royal Children's Hospital in Melbourne when she was 12 hours old due to the paediatrician at her birth identifying the high likelihood of her having a rare skin disorder called Epidemolysis Bullosa, also known as butterfly skin (more on this later). This was later confirmed, along with the information that the type she had was fatal in infancy, with 95% of babies never seeing their first birthday.

Xantha spent the first three weeks of her life at RCH, where they gave her the best of care in the neo-natal ward, and we were then able to bring her home to Albury Wodonga. We are supported at home with a myriad of family, friends, and professionals, including social workers and nursing staff, who came regularly to support us, and provide meals and care for Xantha. Her skin and feeding required a lot of care due to the blisters that erupted at the lightest touch, as well as internal blistering on her internal organs, including her tongue, leading to chronic pain on her part.

Unfortunately Xantha's condition worsened after 4 weeks and we returned to Melbourne, to the RCH's neo-natal ward to make her comfortable. Xantha passed away on the 15th April, in my arms, surrounded by her family and friends. Once again, RCH and local organisations stepped in to support us.

Whilst she was still alive, our family started the Xantha Maree Foundation, raising over $64,000 over three years for RCH and debra Australia, as well as covering some of the costs of Xantha's care. The impact of Xantha's life on both mine and others has been huge, with the eventual end to my marriage, going on to study social work and later creative arts therapy, and starting my own business to help others the way I was helped (more about that here). Five years later I was still recognised in the streets as Xantha's mum, a moment that had me in happy tears. She told me what an impact our story in The Border Mail had had on her, a story I had heard echoed many times previously, that they held their children a little closer after reading it and seeing the photos.

The help we had from Royal Children's Hospital and debra Australia was phenomenal, and it is these organisations I would like to raise money for. I will be donating one third of the money raised to RCH's Good Friday Appeal and the remaining amount to debra Australia. Please help me celebrate Xantha's birthday and her 18th year by donating here.

More about Epidermolysis Bullosa:

From Debra Australia :

Epidermolysis Bullosa (EB) is a rare disease whereby the skin blisters and peels at the slightest touch. Living with EB has been likened to living with third degree burns. It is very painful, and sufferers must be bandaged every day with dressings to protect and medicate their wounds.

EB is characterised by skin fragility with blister formation occurring spontaneously or following minor trauma. EB can be broadly divided into four major categories: Simplex, Junctional, Dystrophic and Kindler Syndrome. These categories can be further subtyped based on inheritance and clinical features.

It is estimated that there are around 1,000 people in Australia who have some form of EB and over 500,000 worldwide. It occurs in all racial and ethnic groups and affects males and females equally. EB may not always be evident at birth. Milder cases of EB may become apparent when a child crawls, walks, runs or when young adults become more physically active. Patients living with EB are faced with daily challenge, as no cure exists and current therapies under development have faced both safety and technical challenges. EB is an area of unmet medical needs with current management focusing on relieving patient pain, stopping infections and providing dressings which are passive and do not address the symptoms associated with EB including severe scarring, infections and development of squamous cell carcinoma. Urgent research is needed to develop therapies that address these symptoms and for that we need your funding support.

Image below may cause distress due to it showing some of the blisters on Xantha’s body, viewer discretion advised.