Please help us to make memories for our boy

Our boy Ezra has been through so much these last few months.

About his story..

We knew something was wrong right from him been around 8 months old. He stopped wanting to learn to crawl, hated been on his front, stopped crying and lost his ability to sit up on his own. After numerous trips to the GP we just kept getting told oh hes just a happy baby and late developer he would catch up. I even had one doctor tell me it was new parent anxiety that I believed something was wrong but I went with what they said but knew deep down something wasn't right. He contacted Bronchitis and a bad case of Croup around 9 months old and it really took its toll. He started having these episodes of shaking almost like a seizure we was in and out of hospital and after 2 clear EEG head scans we got told they are infantile shudders and he would grow out of them which luckily he did. Fast forward to his 1 year vaccines me and my partner said this would be the last straw if he doesn't cry we know something has to be wrong. After receiving 4 vaccines he didnt flinch or cry and the nurse knew something was not right she put an immediate referral in to a paediatrician and we got seen within a week. After seeing Ezra he requested an urgent MRI scan and bloods as his muscle tone was also low and he was concerned about the size of his head and at 1 years old couldn't no longer sit up without support or weight bare. We got the dreaded call from the paediatrician that they have found "changes" and fluid at the back of his brain and they want us to go in and see them. When we went in and after his blood results had come back they said they think he has mitochondrial disease and the mutation of it is Leighs Disease and we got the words that will stick with me forever unfortunately there is no cure and the prognosis is quick.

Unfortunately at 19 months old Ezra has lost his ability to eat and drink so is NG tube fed. Hes now allowed to start eating purees a little bit per day to see if he can pick this back up. As a family we are devasted it has come to this unfortunately the disease is genetic and my Mum also has this disease. We are trying to raise funds to try and make as many memories as possible with our boy and to make awareness of this awful disease that takes the lives of so many babies, children and adults. Right now we don't know how long we have with Ezra so we have come out of work to give him the best care we can and make his life full of memories as a family he is the most sweetest happiest little boy and nothing fazes him but his strength and determination we are hoping and praying he beats this and proves the doctors wrong.

Thank you all for reading ❤️❤️