on fathers day last year (2/9/12) our baby girl was taken to our local hospital. doctors didnt know what was wrong and she under went every test they could do. 3days later after having no success in finding out what was wrong our hospital flew me and my daughter to starship cildrens hospital in auckland. The next day they sent my daughter (who was unreasponsive and bearly with us) for a MRI, and we were told she had a rare disease called ADEM. a simple break down of this is... she got a common cold/flu and her immune system over reacted and attacted her brain and spine causing swelling. simple treatment is high dose steriods.
a week after the steriods, my daughter started coming bk to us slowly, we had to teach her how to talk, eat/chew, move her fingers and hands, even how to sit up as she had lost all these functions and the strength to do it. after 2 weeks we started helping her to walk again.
on the 21/9/12 2 days before her 5th birthday she came home. only 2 days out of a wheelchair. our local hospital was meant to suport us with physio and OT but we were then informed tht she was on a waiting list. As she was only 2 days out of a wheel i felt like they let us down alot. I am a mother of 4 children aged 2,3,5 and 8, not much time on my hands as it is but between me and my husband we have got alot done with our daughter, she now runs around and plays like a normal child, although at 5 1/2 she still cant go to school full time due to head aches and blader not working fully. plus we have been left with behaviour issues regarding anger and emotions.
during the time i spent with my daughter in starship my husband had to take time off work to look after our other 3 kids, bills got high due to phone calls between my husband and daughter. also because of the let down with our public health system we have had to spend alot of money getting the things our daughter needed and needs. also the transport cost for us have gone up hugely due to appointments and special schooling through northern health school.
we just need help getting our bills under control and take the stress off our family so we can focus on our kids and giving our daughter the best we can to help her recover fully. if we cant get help then im going to have to go and get a part time job to keep up, but tht means putting our kids in care and we dont feel tht would help our little girl. my husband works full time so no room for improvement there either.
please help us help our daughter.
to follow my daughter and find out more please go to her facebook page, we set this up to raise awareness for the disease so other families dont have to wait and go through what we did