This really has been the best ever timing for my beautiful young lady to have received her Love Quilt, she really is taking a huge knock back in her seizures, her development, her Todd's paralysis is constant, she is 1 true battler through it all, but thanks to the amazing stitchers and the quilter Yvonne for such a very beautiful and amazing quilt for Aleta xx
Aleta was born at 39 wks, She presented as an extremely quiet baby, she was a very floppy baby seemed slow in her development very early on in her life. All still seemed fine health wise until Aleta starting teething her seizures began at around 5 months old, she continued to have regular seizures, at about 18 months Aleta's seizures become prolonged in presentation,she would cluster in seizure for 24 to 48 hrs. Aleta continues to have very prolonged seizures, that require emergency medication to be given to her, the last 2 yrs have been many a journey to A&E due to Aleta's prolonged seizures. Aleta has continued to take 566 seizures a month, She has autism, significant behavioural disorder, she is left most days suffering with todd's paralysis due to her seizures, she is incontient due to her neurological condition, in the last 3 years we have been told that Aleta has a novel mutation in the GABRG2 which continues to be very limited information currently about, Aleta has a life long condition that no one understands currently, her siblings also have the same condition. There are many days that Aleta can't manage school due to the impact of her condition, seizures & sleep & behavior patterns is a huge issue, we have no prognosis at all, so making plans is very difficult & a huge worry to us, so we are making most of every day right now.