Hugos story, I finally feel ready to open up and talk about our journey, hoping to help and support others. At just 7 months old i began to worry why he wasnt hitting his mile stones and was becoming very weak. He struggled so much he couldnt even lift up his arms Or move his body. In my gut i knew something wasnt quiet right. So i took him to the hospital, they soon began all the checks, from countless blood tests, to MRI scans, gene tests, brain scans, EEGs, nerve tests and injections in the muscle tests. It was a long and stressful process but i knew i had to keep brave and strong for Hugo. (i never ever prepared myself for this, it was so scary the unknown) My amazing partner and family stood by my side all the way. We finally got all the results back and came back he had a few complications, epilepsy, low muscle tone, delayed development and a rare gentic condtion. Stopping him from talking, sitting up, crawling, walking and eating. (You know when you just go numb and dont feel a thing, i felt just like that, it was undescribable). Luckly i have the most amazing support around to help us on this new, long and tough journey. As you can imagine the services and equipment are very expensive and sparse, and funds are tight within the hospital NHS. Hugo has got no equipment or any aids to help him progress, and his pysio is not frequent. I was so anxious about doing this page but SO many people have said just go for it, there are so many kind people and Charities that help children all over the world in these situations. Hugo is just over 2 now and still cant eat, talk, crawl or walk, its possibly the hardest thing in the world seeing your baby struggle so much and feeling helpless but i know i have to keep going for him. Hugo is honestly the most amazing, strong, content and happiest soul ive ever met And will ever meet. I am so lucky and proud of him in so many different ways. I want to

help others and support other families in similar situations, if we can raise the funds for equipment and special aids, we will kindly pass them onto other children that need help too. from the bottom of mine, my family and mostly Hugo‘s heart thankyou. I am so utterly thankful and grateful, This means so much to our family and will change our daily life. (Just want to thank our very special and brave friend Sue, without your help and support we wouldnt be where we are today. We are so lucky to have you in our life x)

Thankyou for helping me, for changing my life and letting me live like other children love Hugo Louie xxxx