Monnay’s Batten Disease Fight

My name is Sereena Morris and I am Monnay’s godmother. Monnay was born a healthy baby girl 5 years ago. She hit all her milestones at nursery and was progressing really well. Just before her 5th birthday, Monnay had started to have difficulty with daily tasks like getting dressed, following instructions and was struggling to learn at school. So her mother decided to find out what was wrong with her and how we help support her. After a misdiagnosis our world was turned upside down when we discovered that Monnay had been diagnosed with Batten Disease (Juvenile CLN6) Batten Disease is an extreamly rare fatal neurodegenerative condition with no cure. Monnay is unable to get rid of waste within the nerve cells in her brain and other body tissues which has resulted in an abnormal accumulation of lipids (fats) and specific proteins.  The symptoms of this accumulation mean that eventually Monnay will experience: *Blindness *Unable to walk *Unable to talk *Unable to feed herself  *Changes in personality  *Challenging behaviours  *Uncontrollable seizures and muscle spasms and eventually premature death. Reading the diagnostic report brought unimaginable tears to our eyes. Her mother, my dear friend is so heartbroken. This disease rips abilities and life away from children. Monnay is already suffering from the symptoms of the disease, she is finding it very difficult to walk so she has to travel in a wheelchair. She has regular muscle spasms and seizures daily which are being kept under control with vital medication. Despite her illness she is a very happy, smiley little girl who adores chocolate cake!  There was was hope in sight when we were told about a Gene Replacement Therapy (GRT) trial in America. Monnay has been on the waiting list for some time and a place has come up. Although there is no cure for the disease yet! The GRT if successful could slowdown or even stop the progression of the disease.  This is where you can help! Money is our only barrier! Fortunately the clinical trials are funded, but unfortunately the travel and accommodation are not!  Your generosity will help Monnay’s mother to fund travel expenses and accommodation costs as well as any other unexpected costs. Over the next 2 years where there will be repeated trips to America. Please help us support her the best way possible while we still are blessed with her presence! Thank you! Sereena x