Hi, my name is Jayda! I’m 4 and a half years old, I really like to go swimming, I love my Mummy reading books to me, and I love listening to music. I’m going to school next year and my wish is to be able to get up and walk around with my friends and sit up in class on my own.
Jayda was born under trying circumstances at the Gold Coast Hospital, with a noticable irregular heart beat throughout a 15 hour labour meant we were rushed for an emergency caesarean. Jayda wasn’t breathing when she was brought into this world, she was resuscitated and began having regular seizures.
We were transferred to Mater hospital in Brisbane where we spent two weeks by her bedside in the Neonatal Intensive Care Unit. They performed many tests including MRIs, EEGs, ultrasounds, blood tests, spinal tap, desperately trying to find the cause.
Jayda was transferred back to the Gold Coast Hospital and she was almost 6 weeks old when she was finally able to come home with us.
At 10 months old we finally received her diagnosis. Hearing she had an incurable, life long condition called Cerebral Palsy was the hardest thing any parent could ever imagine!
Cerebral Palsy is a condition that impairs muscle coordination. The messages sent between brain and muscles get mixed up and the muscles often tend to tense up or become stiff making it very difficult for people with CP to control their movement.
Everyone is affected differently, unfortunately Jayda’s case is quite severe. All her limbs are affected making it hard for her to learn how to sit up, stand up or take steps. Eating and drinking is also difficult and she is yet to say a word.
Cognitively Jayda is very intelligent, she is aware of whats going on around her, her smile will light up any room, she is the happiest, most content little girl I know!
Doctors and therapists right from the start said plenty of physiotherapy and speech therapy from a young age will create new pathways to the brain and increase her chances for a better quality of life. But this is where Jayda missed out immensely!!
Two months after hearing Jayda’s diagnosis our young family hit another life altering hurdle. Luke (Jayda’s Dad) got the news he had a cancerous brain tumour. This meant many invasive surgeries, radiation therapy, chemotherapy and many months spent at a hospital in Brisbane. (one hour from home)
Since I was sole carer for them both, and had to be with Luke because he was considered high risk, it meant Jayda had to sacrifice therapy to keep her daddy alive.
Almost 18 months had passed before Luke was in remission. All that life had thrown at us as young parents really took its toll on our relationship and Luke and I decided to go our seperate ways.
Jayda was 3 when I enrolled her into Conductive Education and an Early Childhood Program.
Since then she has flourished, she loves to be around other children. We are all so proud of her but I know Jayda can do more and get more out of life IF I could provide her with more therapy.
After all that Jayda has endured I believe she deserves the chance to thrive and the oppurtunity to develop new skills. Jayda can have this through a 3 week intensive therapy program that specialises in the NeuroSuit method. Along with many other forms of treatment, this therapy is only available in America.
The NAPA Center do annual trips to provide this treatment to a limited number of Australian children, but unfortunately we missed out on a spot. This now means we need to go to their centre in Los Angeles for Jayda to participate in their program.
I have spoken to several Australian families that have accessed this Neurosuit method for their CP child, they achieve amazing results and gain new abilities that we as able bodied people take for granted. Even after they return from these three weeks of intensive therapy the families notice more strength and determination in their child.
I want this for my daughter more than anything, the only thing holding us back is the major expense. The cost of 3 weeks therapy, flights, accommodation, and insurance comes close to $20,000.
I am now swallowing my pride as I have always thought we could do it on our own but the time has come where Jayda’s needs come first. She deserves the opportunity to participate in this program for a chance at having a better quality of life. For Jayda to be able to sit, stand or even walk could be $20,000 away! What mother wouldn’t want to have this for their child?
I understand that it’s financially difficult for Australian families at the moment, but if you are willing and able to make a contribution we would be forever grateful.
A simple share could help us on our way.
Thank you so much for taking the time to read our story.
Alexia and Jayda
Posted by sara4050, 6th May 2014