Hello everybody, My name is Fleur Gibbs and I am Mummy to a beautiful 10 year old little Girl, Erin Gibbs. Erin has very complex needs because of a rare Genetic mutation called CDKL5. She has two Genes missing. This condition means Erin is unable to sit unaided, stand, walk, talk, crawl, use her hands to play as she cannot grip, or eat. She has delayed swallowing and tongue movements which cause her to choke and aspirate. She has had aspiration pneumonia 5 times, twice needing ventilation for weeks on end. She also has severe Gastroparesis (paralysis of the stomach), colitis, gastritis, oesophagitis, and the start of barretts syndrome, which can lead to cancer. She also has severe bowel dysmobility, severe reflux, causing projectile vomiting, and intense pain that no pain killers ease. Because of this, Erin has had a fundoplication (to stop the vomiting), had a hiatus hernia repair, pyloroplasty to help the stomach empty, and ahesions in her bowel removed. She has a tube into her stomach which has a drainage bag attached to stop her vomiting her own stomach secretions, and is fed directly into her small bowel via another direct feeding tube. She also has violent daily clonic tonic seizures, often requiring very sedating emergency drugs. Any little progress she does make is often forgotten after prolonged or increased seizure activity. She has splints for her hands and feet because they are starting to cease up through lack of use. She has been on end of life care twice but thankfully due to her amazing strength and courage, she has managed to pull through. There are children however, with CDKL5, that have sadly not managed to struggle through. This is a stark reminder of how deadly this condition can be. Despite all these problems, Erin still smiles a beautiful sweet smile and never complains. Research into a cure or treatment is underway, but for full research it is estimated to cost millions of pounds, so please, help me reach my target for just £1,000 for Erin and all the beautiful children like her.They need more funds. Both the seizures and the gut problems can, and have been fatal, so please please, help our children and donate towards a cure. Nobody wants to see their child suffer, or worse still, lose their lives. I am going to Shave off all my hair on 1st July, or before, to raise funds for CDKL5 UK, to go towards a cure. This is a registered Charity for children with CDKL5. I will also donate my shaved off hair for Little Princess fund which help to make human hair wigs for children battling cancer, so please give. Any amount no matter how big or small is gratefully recieved. My hair is currently past shoulder length and I am able to get it into a high ponytail and bun. Thank you so much Fleur xx

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