Our youngest daughter, Bella is 7 years old and is a very lively, fun loving girl. She was born with a virus called congenital CMV which has caused many life long challenges for Bella including cerebral palsy, deafness with cochlear implants, oral dysphagia – non verbal and feeding problems, microcephaly, epilepsy etc. Despite all this she absolutely loves life and gets the most out of every day. She has a very cheeky sense of humour and is very determined.
Bella has life-threatening (tonic/clonic) seizures and these seizures require emergency medication to help bring her out of the seizure. Each time she has a seizure it can take her about a hour to regain consciousness and then she is usually exhausted and vomiting for most of the day. It takes an enormous toll on her body. This also takes a huge toll on the rest of the family including siblings Jarrad (13) & Thalia (10) who assist with caring for her.
Over the last several years we have tried numerous medications trying to control Bella’s seizures, a keto diet, natural remedies and whilst these help, Bella still experiences multiple seizures. We have now been approved by the government to give Bella special medication which is proving to be very effective in reducing Bella’s seizures but this isn’t on the PBS so it is costing us $1000 per month to access this life saving medication for Bella. This medication reduces Bella seizures down to maybe once a month instead of multiple seizures a day.
Bella is also growing up and wanting to be more independent, we are constantly worried she will have a seizure and she can’t be left alone even just to play in her room or eat at the table. She has a seizure alert alarm watching her all night and if the power goes out or we are travelling she needs to sleep with us so we can keep a very close eye on her. If she has a seizure when alone this can be very dangerous – even fatal.
A seizure alert dog would allow Bella to maintain some independence and give us peace of mind that she would be safe in the event of a seizure. These seizure alert dogs are trained to alert and even help care for and protect Bella during a seizure by rolling her onto her side. They go through extensive training and are trained to detect an oncoming seizure ahead of time allowing us to get Bella into a safe position before the seizure occurs. As she is getting older she is getting heavier so it is vital we get her into a safe position during a seizure. Given the extensive training over 18months the dogs must undertake they are very expensive costing $45,000.
Given Bella’s challenges she also needs intensive therapy and a lot of specialised equipment, we have had great success with MNRI therapy. MNRI is an innovative technique that uses Neurosensorimotor Reflex Integration to reprogram the brain. Bella has been making great progress thanks to MNRI and it has drastically altered the course of her life and development for the better. This therapy is changing Bella’s life and future. We have seen significantly improvements in many areas especially her walking, ability to use her hands, especially to do sign language to enable her to communicate, improving her ability to eat which is very challenging with Bella, she is even attempting some basic words. This therapy covers occupation therapy, physiotherapy, speech therapy and even aqua therapy.
We would be so grateful for your financial support to enable us to continue this life saving medication and add a seizure alert dog to our family, plus allow Bella to continue her much needed intensive therapy!
If you are unable to donate that’s ok too. Please send us your love, healing thoughts, positive vibes and prayers.
We are also organising a fundraising event to help raise these funds so if anyone would like to help please let me know.