You have definitely fulfilled a dream here today that is for sure, Jakira is loving spending time on her bedroom floor with her love quilt this is amazing, my tears are over whelmed with what you have all done for my children thank you to the stitchers of Jakira's quilt and the quilters Alison & Janine xx Love to you all for the Jones Family xx
Jakira was born via a c-section at 39 wks, she was in a transverse lie, she presented as an extremely quiet baby, until she began becoming sore with her skin, she would constantly have a sore nappy area, she developed eczema, she really became much worse with formula milk, she was thriving on the milk given, so she went on to goats milk formula, which eased some of her symtoms, she has milk protein allergy. Jakira locamotive skills were very slow to develop she didn't walk until 20months old she has continued to remain very waek upon her feet she has very weak ankle joints. Jakira's seizures began at around 16 months old, she continued to have seizures, at about 16 months Jakira's seizures are prolonged, Jakira has continued to take 80 to 90 seizures a month, she has autism, overactvity, behaviouarl difficulties, in the last 3 years we have been told that there is a novel mutation in the GABRG2 in our family, some, Jakira is still undergoing further research, which continues to be very limited information currently about the condition in our family, Jakira has a life long condition that no one understands currently, her siblings also have the same condition. Currently Jakira has been through a very difficult time over the last 3 yrs, as she became excessivly sleepy with a huge deteriation in her epilepsy control, she was sleeping between 15 to 18 hrs a day, her needs were not understood at all, this was an extremely upset time for our family, she has never really recoverd either, she is educated otherwise than at school due to health & stress school has upon her seizures. We are making most of every day right now as there is no prognosis here at all, which is very difficult to except, but we have no choice.