Just to let you know Joe's Love Quilt arrived safely today, I really want to thank you all for such an amazing quilt for my son Joe this will be so very treasured I can assure you of that, Joe will be surrounded by your love, and his love of music now for sure and his love for the Union Flag well wishes to everyone that has supported my family through this amazing charity thank you xx
Joe was born after a very difficult & extremely painful pregnancy at 39 wks, Joe presented as an extremely quiet baby, he would be violently sick with his milk feeds too. All still seemed fine health wise until Joe's seizures began at around 9 months old, he continued to have seizures, at about 16 months Joe seizures become prolonged in presentation, at 2 1/2 years old Joe had a 95mins seizure that led to respiratory arrest. Joe has continued to take 170 seizures a month, he has autism, recently diagnosed with ADHD, in the last 3 years we have been told that Joe has a novel mutation in the GABRG2 which continues to be very limited information currently about, Joe has a life long condition that no one understands currently, his siblings are also have the same condition. Currently Joe isn't doing well at all, he is not able to attend school due to his constant seizures & sleep & behavior patterns, so we are making most of every day right now.