Freddie's Memory

** Thank you so much to everyone who has already donated and shared Freddie’s story. This money will go be split between all the charities who helped our family on our journey and ensure that any families going through this will have the support they need**

After 3 years of wishing for him, Freddie made his beautiful entrance into the world on the 23rd of January 2025 in Waterford university hospital. Pregnancy and birth went amazingly but soon after Freddie was born doctors noticed there was something wrong. From Waterford we were transferred to temple street hospital where they suspected an injury from birth however after 2 weeks of tests it was confirmed Freddie has spinal muscular atrophy (SMA).

We were then told we were both most likely carriers for the gene which caused Freddie to inherit this from us. In our mind a genetic condition didn’t make sense as there is no history of any genetic conditions in our families however this doesn’t matter as 1 in 40 people are carriers of SMA and if both parents are carriers your baby has a 1 in 4 chance of inheriting the condition.

During Freddie’s short life he was given the most amazing care and love from every doctor and nurse we met. From Waterford hospital to the amazing staff of temple street and Tipperary hospital aswell as jack and Jill, Laura Lynn and the palliative care team who made this incredibly difficult time that bit easier for us.

Thank you

Katelyn Shaun and Jodie.

Freddie is loved beyond measure and deserved to live a long and healthy life. He will never be forgotten and we will say his name every day. In his honour we hope we can raise awareness of genetic conditions so people can get genetic tests done so this doesn’t happen to any other family. We also hope to give back to all those who cared for Freddie and our family through the worst time of our lives so other families can also receive this care in their time of need. Any money raised will go towards helping to cover the unexpected funeral costs aswell as donations to all the amazing hospitals and charities who helped us through Freddie’s journey.