FAQ

1When was Alfie Born?
Alfie was born in May 2016.
2Is he capable of breathing on his own?
Alfie is currently intubated and has a ventilator which helps him to breathe. However, he does take some breaths on his own. He has come off the ventilator 3 times and has managed to breathe on his own for a maximum of 13 days.
3Which hospital is Alfie Currently at?
Alfie is at Alderhey Hospital in the PICU.
4What is Alfie suffering from?
Alfie’s illness is currently not diagnosed. However, he is suffering from epilepsy or constant chronic seizures.
5What tests has Alfie had?
Alfie has had various blood tests, muscle biopsies, genetic testing and EEG. There are so many more gene tests that can be done, but they could take up to a year to get the results back.
6Which Illnesses have been excluded?
Batting
Dravet
Narcolepsy
Pompey
Infections to brain
West syndrome
Krabbs disease
7What medication is Alfie on at the moment?
Clobazam
Piracetam
Keppra
Zonisamide
8What are doctors saying?
Doctors are saying that they have exhausted all diagnostic testing and have consulted with another hospital in the UK for a second opinion. Neither can conclude what Alfie’s illness is. Alderhey hospital are asking us to terminate life support and let him die peacefully.
9What do parents say?
They say that they are blessed to have Alfie in their lives. As Alfie’s parents they are by his side as many hours as they are allowed to be and filmed the response that Alfie is having to their interaction with him. This can be shown on the videos on the site. They have his best interests at heart and would never want him to suffer! They believe that he can get better with help. They are appealing to the medical experts worldwide to help diagnose Alfie so that a treatment plan can be put in place. They strongly believe that there is someone out there that can help him! They believe it is their duty as parents to investigate all avenues of care and are willing to collaborate and work with any medical professional who they see has their families best interests in mind.
10What is Alfie’s coma GCS Score?
This is 5-10.
11I am a medical expert. How can I access medical records?
Please go to the home page and you will find a link for helping as a medical expert. Once you have registered and been approved, you will be able to access Alfie’s medical records.
12How can I help?
We need money to be able to help get his diagnosis. Once we have a diagnosis, we will have a better idea of how much needs to be raised for Alfie’s treatment. There are three ways to donate. Donations can be made via bank transfer, paypal or the justgiving link. You can also purchase Alfie merchandise. This will help by all profits of these items going to Alfie’s fund, but simultaneously it will raise awareness when you show these items which can be seen by public in your day to day lives. If you are not able to contribute financially, then raising awareness by sharing anything you see from Alfie via social media would be fantastic. If you have not already done so, please join our facebook group, where there are regular updates on Alfie and what is currently happening.