Northampton family of 'amazing' 23-month-old girl with incurable illness backs hospice appeal

Renessme Balanel started experiencing seizures when she was eight-weeks-old and her parents, Mariana and Cristian, said no-one could explain why.

Mariana said: “It was all so scary.

“One episode was 40-minutes long and she didn’t react to any medication.”

Genetic testing began to determine if it was mitochondrial disease, where tiny parts of cells called mitochondria fail to make enough energy which harms organs like the brain, muscles, heart and kidneys.

Mariana said: “We did lots of research into it and really hoped they were wrong.

"But then we got the call to confirm. I was really scared and we went through a process of trying to understand and accept. All we wanted was to be there for Renessme but I was also fighting for myself.

"I didn’t want to appear unthankful, but I didn’t expect this life for our daughter, we wanted to give our baby girl everything.”

During their time at Northampton General Hospital, Mariana and Cristian received support from Rainbows Hospice for Children and Young People through the charity’s clinical nurse specialist, who worked alongside the NHS to help them navigate an incredibly difficult journey from the moment of diagnosis to the present day. Now Mariana and Cristian are backing the charity’s summer appeal.

Money raised will help Rainbows deliver holistic, expert support to babies, children, young people and their families during times of uncertainty, ensuring that every child with palliative care needs receives coordinated, specialist input alongside their wider care team.

Mariana said: “After diagnosis, the Rainbows clinical nurse specialist was there for us.

“She was there for every step we needed her, and I realised just how important she was to us. We wouldn’t have got through it without her.

“She listened to us and she was our advocate. She understood what we needed and always came to see Renessme and us to ask how we were and I really appreciated that.

“We have spent a lot of time in hospital, most of this year has been in hospital.

"And when we are at home, we have also had support from the Rainbows hospice at home team. They are also amazing and I love how they interact with Renessme. They are so experienced and really make everyone feel at ease.

“It is hard for me to trust other people with my baby girl but everyone at Rainbows makes us feel safe.”

Mariana and Cristian, and Renessme’s brothers, Dominic, eight, and seven-year-old Elijah, don’t know what the future holds and devote their time to making precious memories.

Mariana said: “We have had two discussions in hospital where doctors have said they didn’t think she has the power to fight but she always proves us wrong.

"She is such an amazing girl and she loves to smile and babble. Everyone has told us to take it day by day and to try to enjoy everything we can, but we never know when it will be the end.”

To support the Rainbows summer appeal, visit rainbows.co.uk/appeal