We have had some amazing news regarding Spinraza. Emilia has finally been accepted on the trial for this life prolonging drug after 6 months of battling she will receive her first dose next week. She has started to absorb through her stomach once again and is currently 2/3rd of the way there! The complex team here are planning Emilia to go back to Torbay Hospital in the coming weeks if she continues progressing with feeding. We have finally got a new home in Brixham and are no longer homeless! Thanks to everyone donating and sharing 💜

Emilia has had her surgery last week unfortunately her stomach is still not absorbing and is requiring more surgery in July. We are still fighting to get the spinraza treatment for her in Bristol but are prepared to go anywhere to receive this treatment she desperately needs. We would like to thank our families and friends for all there support and raising money for her over the last few months.

Thank you for all donations. Emilia sadly had her right lung collapse over last weekend which sent us back to Bristols Paediatric Intensive Care Unit. The physio's, nurses, doctors and consultants have worked tirelessly to get her right lung inflated which has been a success. Emilia's neuromuscular condition gives her a very weak lungs and could collapse again at anytime. She is still awaiting her gastrostomy in may. We are looking at clinical trials to help her muscles with development and are fighting to get her the spinraza treatment.