A Better Life for Livie

We are raising funds for the treatment and care of Olivia, our beautiful baby girl. Little Livie has been diagnosed with a rare and serious genetic neuromuscular condition called spinal muscular atrophy (SMA) type 1.  SMA is caused by a gene deletion which results in deterioration of Livie’s nerve cells connecting her brain and spinal cord to her body’s muscles. There is no cure and Livie has its most severe type. Livie’s muscles used for activities such as crawling, walking, sitting up, moving her head, and even swallowing and breathing, are becoming progressively weaker and shrinking. Without any treatment, little Livie’s condition would continue to deteriorate and it would be unlikely that she would live past her 2nd birthday. Every child with SMA is different and little Livie’s future is very uncertain.

Treatment options for little Livie are very limited.  Our best hope for a better life for Livie is a once-off gene therapy called Zolgensma, which is currently only available in USA. It costs approximately US$2,100,000. Studies have shown that Zolgensma can substantially improve quality of life. Livie's antibody test qualifies her for the treatment. We are against the clock as Zolgensma is only available to children under the age of two years.

Little Livie’s Story

Little Livie was born on the 26th August 2019. We have never felt a love like this. It was incredible for us to see our first child smile, laugh and babble for the first time and watch her develop her little bright, affectionate and loving personality. Livie brings such joy and happiness to our lives every day and her smile can brighten the whole room even on the rainiest Irish day.

We grew concerned as Livie missed some of her development milestones. We contacted her GP and were eventually referred to Crumlin Children’s Hospital. Our world changed forever on 9th April when little Livie was diagnosed with SMA type 1. This condition affects approximately one in every 10,000 babies. It had already been such a hard time for our family with the COVID-19 lockdown. Due to hospital policy on social distancing, Karen (Livie’s mum) was alone when given the diagnosis and Keith (Livie’s dad) was alone when he heard the diagnosis over the phone. It is something that will stay with us and our family for the rest of our lives. We were left devastated and one of the hardest parts of this process is being isolated without support from our family and friends during this difficult time.

SMA does not affect Livie’s cognitive ability. She remains a bright, alert and bubbly little girl, curious about everything she sees and desperate to experience life. Livie’s smile and laugh are infectious. She loves engaging with people and wants to be in the thick of every conversation around her. Normal infections and illnesses such as a chest infection can be very serious for Livie, possibly life-threatening. The current COVID-19 pandemic is so worryingly dangerous for Livie. Karen will be Livie’s full time carer as Livie needs support all day and every day. Her days and weeks are busy with medical appointments and check-ups.

Livie has received her first dose of another treatment called Spinraza through a lumbar puncture in Ireland. We remain hopeful that Spinraza will prolong Livie’s life and allow Livie to gain a degree of head control and sit with extra support. We have been advised that Livie will still need respiratory and feeding intervention to survive. She is already struggling with her breathing and coughing. She needs to wear an oxygen mask every night. This is very uncomfortable for Livie and she struggles to sleep with it. It is very unlikely that Livie will ever stand or walk.

We are fundraising for Zolgensma because we could never afford to pay for this treatment by ourselves. Our dream for Livie is to give her the best chance at life possible. Zolgensma is our best hope to do this. If we are unable to raise enough funds to pay for little Livie’s treatment, we will put all donations towards Livie’s care with the hope of giving her the most comfortable and happy life possible.