23-month-old Renessme started experiencing seizures when she was eight weeks old and her parents, Mariana and Cristian, said no one could explain why.
“It was all so scary,” said Mariana. “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.
“We did lots of research into it and really hoped they were wrong,” said Mariana. “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.
“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 Elijah (seven), don’t know what the future holds and devote their time to making precious memories.
“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,” said Mariana. “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.”
It is hard for me to trust other people with my baby girl but everyone at Rainbows makes us feel safe.