For Olivia

Please read Olivia's story. Our daughter Olivia was born during the first lockdown in April 2020 needing surgery on her oesophagus. Other than that, Olivia was a perfectly healthy baby girl. We were told that this surgery could not be done in Ireland. For the first 6 months of Olivia’s life, she had to be kept in hospital in the Neonatal High Dependency Unit in Temple Street in Dublin while she awaited surgery. She was a firm favourite with the nurses and staff, babbling, rolling and smiling with glee with her infectious smile whenever anyone came into her room. Despite never having been home, she was reaching all her milestones and we were so proud of her.

When she was 6 months old, she was transferred via the Air Corps to a hospital overseas. The surgery involved keeping Olivia in a medically induced coma with the aid of a ventilator for nearly 3 weeks to allow her oesophagus to heal.

Devastatingly, Olivia did not wake up the same baby. Our baby girl lost all of her skills and had complete regression. She couldn’t do anything. She couldn't even smile. 3 weeks later, Olivia started having seizures. We were told that these type of seizures were a medical emergency.

An EEG (recording of brain activity) and an MRI confirmed epilepsy and brain volume loss. Before her surgery, Olivia’s brain was perfect. We have been told that Olivia’s brain volume loss is significant and will impact her life forever more. Olivia’s head growth was also normal pre surgery. But post op, it has now dropped below the chart.

We cannot put into words the devastation we feel that our daughter will now need care for the rest of her life. She is 28 months and still not walking or talking, pointing, clapping or even babbling. Her future has been taken away from her. She has been robbed of her future. Right now, she should be running around, talking and laughing with her two older sisters and doting on her new baby brother. The lives of her siblings have now also been altered forever. Who will care for Olivia when we are gone? Where will she go to school? The worry for our beautiful girl is never-ending.

Infant epilepsy can be catastrophic to development. We knew nothing about epilepsy before it turned our lives upside down. Olivia still has epilepsy.

We will never give up hope for Olivia. Early intervention is vital. I (Gwen) have not returned to work since Olivia’s birth (a job I truly love) and one income must now support a family of 6. The plan was to return after Olivia recovered from her surgery. Now that Olivia has additional needs, the shocking state of the services for people with disabilities in our country has shocked us beyond belief. The system is overloaded, the therapists are overworked and understaffed. The system is broken. I have been teaching for over 20 years and have taught many children with varying needs. But I didn’t get it - the lack of services. But I get it now. Disability services in this country are hugely under-resourced. The fight for our children is exhausting. Most people who read this won’t understand the pain of parenting a child with a disability (as we did not truly understand previously). No parent chooses this life. Many people question how do we do it? We just do. The Early intervention preschools in COPE, Enable Ireland etc closed during Covid and never reopened. How has this happened?

Olivia needs intensive therapy, and we have taken it upon ourselves to seek the best services to help our daughter reach her potential. We want to provide her with therapies and specialist equipment that she needs to have a better quality of life. She faces difficulties with muscle tone, balance and coordination, and we are told she needs to wear AFOs (leg braces) for the rest of her life.

Private therapies are excruciatingly expensive. Olivia has been lucky enough to secure a place on the NAPA (​​https://napacenter.org/) programme in BOSTON this coming Halloween and is completing Swim Lab International in Limerick next June 2023. These therapies will no doubt help Olivia. The places at NAPA are like gold; many families apply year after year and do not get a place. We have to do this for Olivia. Neuroplasticity is real- the brain learning to form new pathways to learn new things. NAPA will be opening a London clinic next year. Olivia will be doing intensive Physio, OT and Speech and Language this year. Our goals for Olivia this year are to start walking and communicating with us.

It is very difficult for us to share Olivia’s story. It is heartbreaking and so emotionally draining to tell it again and again. But this isn’t about us. It’s about Olivia. We adore every single thing about our amazing girl and will continue to do everything we can to help her.

Thanks for reading. Thank you to our friends and family who continue to give support. To friends who are afraid to ask about Olivia, please do. This should not have happened to our daughter. But it did. It could have happened to any other family but it happened to us. We are incredibly determined to help our gorgeous girl. It has been difficult for us to decide to do a “Go Fund Me” for her. All donations will be used for Olivia’s therapies and equipment. Please support our fundraiser for her. If you do so anonymously, please let us know so we can thank you properly.