Saturday 21 September 2019

Parents of 'most pleasant little baby' born with rare skin condition and incurable cancer seek help

"She's such a warrior, she's such a fighter"

Mícheál Ó Scannáil

The parents of 'Eve the Warrior Princess', who was born with an extremely rare skin condition which led to incurable cancer, are seeking help to get their daughter the treatment she needs.

After a completely normal pregnancy, on August 8 2018, Eve Creamer was born.

Shortly after her birth however, the one-year-old was diagnosed with Congenital Melanocytic Naevi (CMN), an extremely rare skin condition which caused more than 50pc of her body to be covered in moles and birthmarks. An MRI scan at six-days-old revealed there was also abnormal skin on her brain and spine.

By the time Eve was 10-weeks old she had developed hydrocephalus and epilepsy and as a result of this required brain surgery to insert a shunt. Three months after she was born, Eve's parents Sabrina and Robbie were dealt a further blow when they learned that the abnormal skin on Eve's brain was cancerous and would be very difficult to treat, and impossible to cure.

Eve in hospital early in her life with man Sabrina
Eve in hospital early in her life with man Sabrina

Despite her illness and the oral chemotherapy that she has to take, Eve's mother Sabrina said that her happiness is infectious and she never complains.

"Eve at the moment is OK. She's on chemotherapy. We go up and down regularly to Crumlin and temple Street for checkups, but things can change so quickly with her," she told Independent.ie.

"We've been told she's had a lot of shunt complications lately, that's why we were just in Temple Street there, and it's very likely with her condition that her shunt will get clogged again and it will put pressure on her brain and she'll need anther operation again.

"Eve is brilliant," she continued.

Eve (1) with her dad Robbie, Mam Sabrina and sister Ayryn (5)
Eve (1) with her dad Robbie, Mam Sabrina and sister Ayryn (5)

"She's the most pleasant little baby you'll ever come across. She has a smile for everyone. She just wants hugs off everyone as well. The doctors and nurses are all mad about her and the doctor brought her into theatre and she had the hands out looking to hug everyone in theatre.

"That's just the way she is. She just loves people, loves attention and loves her big sister Ayryn (5). She's great. Considering everything she goes through she is just amazing. Her skin condition can cause her to be prone to dry skin and irritation, especially flares up with the chemotherapy, but to look at her you just wouldn't think it.

"She just gets on with it so well. If she's complaining you know there's something definitely wrong, she's just brilliant. She's so full of fun and wanting to play and mess."

Before Eve was born, Sabrina and Robbie got married and began to save for their dream home. Having bought a house to renovate, they were living in an old cottage owned by Sabrina's parents while they waited for planning permission.

Unfortunately because of Eve's condition, Sabrina had to go on unpaid leave from her job as a full-time nurse, and Robbie often has to leave his work as a self-employed hairdresser to care for their daughter. As medical and living expenses amount, the renovations for the new home came to a halt and the family have been force to stay in the cottage, which doesn't even have a shower or bath.

Sabrina said that they are desperate to get out of the damp cottage which is bad for their daughters' health, but that they cannot afford it financially.

"After 12 months of going through very difficult times with Eve, it's starting to put financial strain on us," she said.

"We have a long road ahead with Eve and things are only going to get worse and we thought about whether we should accept help for a long time and we have come to the decision that we should for Eve's sake.

"Our house situation at home isn't great for having a baby that's on chemotherapy. She's immunocompromised at the minute so she's prone to pick up infections easily so it's worrying us having her in the house the way it is now.

"We have no way of getting out of our situation," she continued.

"We just don't have the funds to do it. It was an old cottage owned by my parents and it had been left idle for about 12 years so we did it up a bit just to make it some bit livable. We wanted to put the bath and showers and things in but as it turned out, wit was going to cost a lot to get it right.

"So we decided to leave it the way it is and save our money for our mortgage. We're near my parents so we go over and back for showers. We bought a house and got married soon after  and started to save to do up the house. Then I found out I was pregnant with Eve and everything was all fine, we were putting in planning permission for the new place and then just everything from the day she was born has stopped.

"We were planning on getting a top up on our mortgage for our new house but we can't do that anymore with me not working."

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Eve (1) with her dad Robbie, Mam Sabrina and sister Ayryn (5)

Because of the rarity of Eve's condition, doctors cannot give her parents a prognosis or life expectancy. They do however know that the condition is currently incurable.

Speaking about Eve's condition locally as well as with parents of sufferers globally has helped the family to cope. The family also received a boost to their spirits when the day after winning the All Ireland final, the Tipperary senior hurling team visited them in hospital.

"Because her condition is so rare, they can't really give us a timeline of anything. We know that what she has is not curable. This has a 100pc fatality rate but they can't really give us a timeline of when that will happen we just have to hope for the best," Sabrina said.

"It's very tough to be honest. The first six months we were just in complete shock just trying to process everything. My pregnancy was normal, everything was fine. This was all only discovered when she was born.

"So we were just in a fog for six months but we're starting to come to terms with it as best we can now and just trying to do our best for her and enjoy her as best we can and keep her as happy and comfortable as we can.

"She's such a warrior, she's such a fighter. She's gone through seven operations already and she just bounces back so quickly it's just amazing so we call her the warrior and she's a princess. So she's been sort of christened the warrior princess, it suits her."

Sabrina said that initially herself and Robbie were reluctant to receive outside help but after recently spending three weeks in Temple Street Hospital, they realised that they cannot cope financially on their own.

Sabrina's brother set up a GoFundMe page where donations can be made to the family. You can donate here.

  • https://www.gofundme.com/f/eve-the-warrior-princess

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