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Weʼre raising £5,000 to pay for regular specialist therapies/equipment to aid Henri's development

Walton-on-Thames, UK

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Welcome to our page, raising money for our beautiful son Henri who was concieved after many years of infertility, surgeries, losses and 6 cycles of IVF treatment.

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 .

He had an electroencephalogram (EEG) test which 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.

We were both working full time, both in well paid jobs so we planned to save for a house and wedding once the maternity period was over.

Obviously with Henri's diagnosis this all changed. He has been registered as disabled, mum was unable to go back to work full time, we had to register as carers and claim DLA (disability living allowance) just to survive. Unfortunately we are moving out of our home of 4 years, having to re home our cats and are moving in with family in the aim to save some money

Henri is 16 months 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 such as physio, speech therapy and more. We hope that he will be able to walk one day and also to communicate in his own way with us and are planning to start using AAC (Alternative and Augmentative Communication ) with him such as the 'Proloquo2go' app or PODD which are symbol based communication aids he can use to make sentences

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

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Corinne Burns

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    4 months ago

    Corinne Burns started crowdfunding

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    Page last updated on: 4/11/2018 10:21 PM

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      About the fundraiser
      Corinne Burns

      Corinne Burns

      Walton-on-Thames, UK

      Founder of @IBDSuperHeroes #IVF mum of a beautiful boy with Angelman Syndrome 😇💙👶 Fundraising for Cure Crohn’s and Colitis and Angelman Syndrome (Assert UK & FAST) Raising awareness for IBD (Inflammatory Bowel Disease) , Angelman Syndrome and IVF/Infertility

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