Our son Noah has been diagnosed with a condition called infantile spasms (also known as west syndrome). IS is a very rare seizure condition which causes brain damage, regression in development and can cause a person to be severely disabled and in the most severe cases causes death.

Due to its rarity, unfortunately a lot of medical professionals and even A&E doctors aren't familiar with the condition. 

Due to delays in his diagnosis, he was experiencing seizures for 4 months before a treatment was started. He was hospitalized and spent 4 weeks being barraged with  different treatments and tests to try and find the cause of his seizures, which he was having 200-300 times a day. 

The seizures caused him to have a complete regression in his development. He lost all his head control and use of his arms, stop babbling and smiling and had periods of intermittent  blindness. He spent his days lying down having seizures or crying most of the time which was heart breaking.

He has since started treatment to control the seizures, which seems to be going well and we are waiting for  EEG results to confirm. Babies of his age have the ability to form new neural pathways in their brains, learning new skills even when brain damage has occurred, but it is important to get the right treatment, and early.  We want to get Noah the best physio and developmental therapy’s available, as soon as possible to help him achieve his full potential, whatever that may be. 

The NHS is wonderful, however because the services are under funded there is a 6 month wait for therapy treatments. Noah needs help now while his brain has the best chance of recovery. 

Any donations will be used to fund private therapy treatments for Noah while we wait for the NHS services to help. He is due to start the Snowdrop program for brain injured children in July and we will be exploring all options of physio treatment too.

Thankyou for reading and giving Hope to Noah