* A few updates at the end*

Welcome to our page! We are trying to raise money for specialist therapies and equipment to aid our son Henri's development. We are completely grateful for services Henri receives from the NHS, but they are limited.

When Henri was 5 months old, after a grueling two months in St Peters Hospital and under the specialist neurological team at St Georges hospital in London due to developmental delay and seizures, Henri was finally diagnosed with Angelman Syndrome  .

After concerns about his development, Henri was scheduled in for an EEG test by his Paediatrician. A electroencephalogram (EEG) test is a recording of brain activity using small sensors that are attached to the scalp to pick up the electrical signals produced when brain cells send messages to each other. After the exam we were informed that we were booked to go straight to A&E as they picked up subtle but frequent seizures throughout the entire examination. After several tests including a lumber puncture to rule out any infections such as meningitis, genetic testing revealed that Henri has Angelman Syndrome

During his time in hospital he became unable to feed due to the seizure medicine making him very drowzy and he eventually needed a Nasal Gastric tube for a few months to help him to get the fluids, food and medication he needed. He wasn't weaned at this point. He had his first solid in hospital.

Our world fell apart. We were utterly crushed... and our hearts still break every single day!

Angelman Syndrome is a genetic disorder that affects the nervous system and causes severe physical and intellectual disability. It is not a disease, it is a neurological disorder that causes severe learning difficulties, and although those affected have a normal life expectancy, they will require looking after throughout their lives.

Henri is almost 3 now and coming on leaps and bounds but we are trying to raise money to be able to give him some specialist therapies and equipment to aid his development.

Henri needs regular physiotherapy to strengthen his muscles and help him to develop his motor skills and hopefully lead him to walk unaided. He is now able to sit independently but we are always close by as he tends to topple backwards when he is excited. He is unable to get from laying down to sitting up unaided but with assistance is starting to build the confidence to go to the floor from sitting. He is moving around the room by doing a comando crawl which is giving him some independence and he can lift his body up using his knees but his upper body and arms are not strong enough to extend to hold his weight to crawl properly yet. He is using a walking frame at home and school where he is supported but learning to move one leg in front of the other to walk and move around the room. He is very wobbly but will put some weight through his legs to stand when held by an adult and sometimes likes to try and take steps.

We have started to use a AAC (Alternative and Augmentative Communication  ) system with him to communicate, which is a symbol based communication aid he can use to make sentences. We 'model' language to him using this book at school and at home, in the hope that he will learn to do the same back to enable to communicate his needs and thoughts to us. We have a basic book kindly given to us by the charity Angelman UK but plan to make a lighter version with water proof paper and characters and pictures within the book that are personalised to Henri and the world he knows around him. This involved subscribing to a service where you can edit and print the images at a cost. There is also a version of PODD that can be downloaded for a cost for a tablet or i pad which we hope to get once he has shown an understanding in the pictures

Thank you so much for reading and of course thank you in advance for any donations made. They are so very much appreciated. We want the very best for our beautiful son

Corinne, Xavier & Henri xxx

2021:

Coronavirus as put a holt on a lot of therapies and the like but we are excited that things are beginning to become more normal again. We hope to start some private therapy soon and continue to fundraise. Henri will be 5 in January.

Henri is sitting confidently, 'bum shuffling' a little bit albeit not too efficiantly but he is baring weight through his arms but not able to co ordinate crawl. We hope to support this development and to of course to walk.

He now uses a Grillo Walker pictured above he is doing very well at trying to get himself around the class at school and in the garden. We hope this will help with his walking.