Just to let you know, Jacob received his quilt, what an amazing surprise, he is over the moon with it and loves it. I can't thank the people enough for making my little superhero this quilt, they have made my little boy so happy x
Jacob was born at 38 weeks, he was diagnosed with Pierre Robin sequence and cleft palate. He had an NG feeding tube and an NP airway put in. He had his cleft palate repaired at 9 months old.
At 18 months Jacob started to have balance issues, an MRI scan revealed he had chiari malformation and epilepsy. They decided at this point to carry out a micro array genetic test, this showed that Jacob had a rare deletion gene 16p11.2. Jacob had decompression survey aged 2.
At the age of 6 Jacob had his 2nd cleft palate operation to lengthen his palate to try to help improve his speech. His chiari malformation was also causing him some problems so he was decompressed again and the herniation cauterised.
Ever since birth Jacob has displayed hearing difficulties, after having another MRI scan on his ears he was diagnosed with hearing loss and a condition called enlarged vestibular aqueducts.
Jacob attends a special school, he has global development delay and struggles with his speech. Jacob is a happy little boy who truly is a real super hero.