Wow!! Quilt arrived today and its gorgeous!! Cant thank everyone enough for Chloe's quilt!! She absolutely loves it!! She has named every character about a million times and even asked to go to bed (already!!) Chloe has another surgery coming up (luckily it's only for dental work this time) and i know her quilt will be first in her bag!! Thank you so much. You all do an amazing job and are making lots of children happy. Here is a big double thumbs up from Chloe
Update: Just wanted to share this picture of Chloe. She received her quilt on the 4th of may and literally hasn't been without it since!! Its been her comforter, she hides under it when anxious, it helps get her off to sleep at nights, it also helps her sit still!! As long as she has her blanket she is happy!! She actually managed to sit and watch a full length film beginning to end!! Its helped her in more ways than one. Thank You all again, you all do a wonderful job and make many children very happy. Xx
Chloe was diagnosed at birth via a blood test. She was found to have a deletion of a chromosome and resulted in her being diagnosed with the rare syndrome, Smith-Magenis.
She then had various tests which have resulted in her being diagnosed with further complications such as a duplex kidney, mass in her brain, larygomalacia, pulmonary stenosis and a hole in her heart. Due to a weakened immune system, she is also faced with recurrent ear, chest, urine and skin infections. These coming months are also going to tough for her as she is due to undergo various anaesthetics for surgeries and testing. She is due to have tonsillectomy and adenoidectomy, as well as grommets inserted, a hernia removed, a lump on her lip removed, imaging on her spine to test the degree of her scoliosis and an EEG done as she is displaying seizure activity. Her syndrome also means she has severe sleep disturbances due to an inverted cicadian rhythm, this can have a big impact on her already stressful behaviours. She has regular meltdowns and has displayed extreme self injurious behaviours.
Despite all this she is the most loving, caring, affection and smiley little girl. She has such an endearing personality and is loved by everyone she meets.