We are Melanie & Greg. We welcomed Noah into the world and our family on 23rd January last year. I am a nurse and Greg was an occupational therapist until he left his career to be Noah's full-time carer.

Noah was a 'sicky' baby from day 1 but was gaining weight so nobody was concerned until I took him to the GP at 6 weeks old.

Noah was admitted to hospital for over 3 months. He deteriorated & is now fed into his bowel 18 hours a day. He has gastric drainage through his PEGJ and the tiny amounts he tries to eat, he vomits or it drains into his drainage bag. Despite there being a test available at Great Ormond Street Hospital (GOSH) & GOSH being happy to see Noah we have a consultant who is delaying and not getting him the help he needs. We have been told there is 'no rush' as he won't be starting school until he is 5!

We have no support & our experience of the NHS has been disappointing. If we were not health professionals I dread to think where Noah would be now. Greg gave up work and is here full-time for Noah as his PEGJ enters his abdomen into his bowel & he would not be safe at a nursery. He vomits daily & he is beginning to realise he is different.

The funds from this page would enable us to seek a diagnosis from a specialist as we feel sure we do know what the cause is. It is incurable but possibly something that could be managed better to give Noah a better quality of life.

In addition to this, we then want to ensure that no other parents suffer how we have. It has been one long battle from day 1. We want to launch and run an advocacy service for parents seeking diagnosis for their children and to access the right services. With my experience as a manager and nurse & Greg's as an OT assessor, we want to dedicate our lives to help other parents by advocating for them as we know the system and where to signpost others to. Not only this, but to speak on their behalf if needed & attend appointment with parents for support & advice