Thea Jean Scott was born on 24th August 2016 after a relatively normal pregnancy for Lynsey and Mark.
She was delivered at St Johns hospital in Livingston but it soon became apparent that there were problems with movement and breathing. She was intubated for ventilation and transferred to the neonatal until at Edinburgh Royal Infirmary.
It was assumed through nerve testing that Thea had a condition called Congenital Myathenia Syndrome (CMS) and this was later confirmed by genetic testing.
Thea was transferred to the Royal Hospital for Sick Children at the end of October where she is receiving a medicine for her condition and remains ventilated through a tracheostomy put in place just before Christmas.
Thea has been through a huge amount. On top of this Thea was born with talipes affecting her left foot and dislocated hips, which have been associated with the muscular condition.
The talipes has been corrected and is now managed through boots and bars which she wears overnight to prevent a relapse of the foot.
The first 4 months of this year were particularly tough for the Thea and her family as she struggled with decreased movement and interaction.
However since beginning of May Thea's movements have been improving slowly and she appears to be getting stronger.
The family have been given an estimated discharge date of 2nd October for Thea to come home with her ventilator support and care package and everyone is working towards making her home environment fit for a princess.
We are funding with Justgiving to give Thea the best start possible when she is home. This will involve extensive support of professionals, family and friends and is likely to cost a significant amount to give Thea the best possible outcomes.
We are trying to ensure that Thea and her family get everything that they need, whether that be sensory toys to aid development, monitors to ensure that her safety and care are the priority and support for the family should it be required.