Help to improve Teddy's quality of life
Teddy was born on 17 July 2020, in a very poor condition and had to be resuscitated, he was then taken to the Neonatal Ward in Northampton and at 5 hours old Teddy had his first Epileptic seizure, at 10 hours old he transferred to Leicester Royal Infirmary Hospital, where he spent the next 5 weeks being monitored in ICU.
After being transferred back to Northampton Hospital Teddy spent a week there before he was finally allowed to go home. A week later we received news that Teddy had been diagnosised with the following
- Early onset epileptic encephalopathy - type 19 GABRA1 - de-nevo missense mutation
- Epilepsy and global development delay, significantly hypotonic
- Mild hypoxic ischaemic encephalopathy
- Entirely NGT feed, gastro-oesophageal
Teddy is now on 5 different types of medication to reduce his seizures. Due his condition he has a severe development delay and requires monitoring 24 hours a day. Everyday we complete physiotherapy to make sure his muscles and joints are being worked. We have to carry a feed pump and suction everywhere we go.
Teddy's mum has now had to put her career on hold to be Teddy's full time carer. The financial impact has been huge on our little family. We have reached out for funding with regards to regular professional physiotherapy and also a seizure monitor but unfortunately we haven't been lucky enough to receive the support.
Going forward Hydrotherapy and Hyperbaric Oxygen Therapy are two treatments that have proven to help children with similar medical condition to Teddy. Hydrotherapy was previously supported by our local NHS trust but that is currently in the process of being removed.
As previously mentioned only one of us is able to earn a living and we have tried tirelessly to receive income support but unfortunately we don't tick enough boxes to qualify for universal credits.
