Ethan Zerfahs is a beautiful 10 month old baby who has a massive smile and wonderful temperament

A couple of months ago his mum Rebecca noticed his development with sitting up and supporting his head was not as advanced as she thought it should be and wanted to investigate further .After an initial visit to the doctor Ethan was referred to the hospital for further tests. As the results came back more and more tests were then required.. The frightening news was given to his parents Marc and Becky that this could be a metabolic illness and very serious - but they wouldnt know for certain until all the test results came back . This was a terrible time for them waiting and not knowing the outcome for their beautiful boy whilst trying to keep things as normal as possible for their other 3 sons

Ethan then started having infantile siezures and was rushed to hospital . Again this was very scary and heartbreaking to see him go through . He had to endure test after test to get to the bottom of what was causing the siezures to establish how best to treat them . He did this with such bravery , strength and no fuss , he was then and still now an inspiration - with his mum and dad always constantly by his side every step of the way

After being weeks in hospital , going through constant tests , having gruelling treatment regimes, and his siezures still present , his parents were finally given the deveststing diagnosis , the news that they most feared , that their beautiful angel - our precious grandson - has Leighs Syndrome .

Leighs Syndrome is a very rare genetic progressive illness that is life limiting and incurable . The treatment here in the UK is a coctail of different drugs , but we do not have access to a new drug that is being trialled in America - EPI -743 - that already is showing much better treatment outcomes for Leighs Syndrome and is much more efficent than any we have here.

Our family in America are already researching how Ethan can be part of these trials and we want to get him over there as soon as we can . The consultant in Birmingham has supported this too and is also looking for contacts to apporoach to make this happen.

This will be very expensive , we do not know how long Ethan will need to be there and there will be all sorts of costs and contingenceys to consider . Marc and Becky are constantly by Ethans side and ,as they run their own business too , this brings its own challenges and stress to earnings They have been stoic and resolved to fight for Ethan in any way possible and their strength in the darkest of times has been and continues to be beyond measure . No parent should have to ever go through this - No child should ever have to suffer like this .

Please please could I ask your help to support them to raise the money to get Ethan to America and give him this chance . The smallest donation will be a blessing and so very much appriciated . Also if you could share this page as widely as possible to others to raise awareness of Ethans cause we will be eternally greatful - with much love