I was born at about 3am on Wednesday 7th September 2011. It was a big surprise as I arrived at 27 weeks (3 months premature), weighing 1228grams. I had to spend 91 days in the Neonatal Intensive Care Unit (NICU) and Special Care Unit, before being allowed home.
I had a very stormy start that was complicated by respiratory distress syndrome, pulmonary haemorrhage, chronic neonatal lung disease, a patent ductus arteriosus, as well as bilateral Grade II intraventricular haemorrhages that progressed to periventricular leukomalacia (PVL). I guess you could say I was a fighter from the very beginning!
Breathing was tricky as my little lungs weren't quite ready to go to work. The brain bleed that I suffered in my first 36 hours, caused a brain injury that resulted in my cerebral palsy condition. I was diagnosed with spastic quadriplegia Cerebral Palsy a month after my first birthday. This causes me to have stiff, tight muscles in all four limbs, but worse in my legs.
I have had a range of surgeries and treatments, including multiple rounds of botox injections to attempt to release the spasticity in my legs, and a strabismus eye operation to straighten my eyes.
My body is never at rest. My muscles are constantly overworking and tightening. I also use a lot more energy to overcome spasticity to make purposeful movements. All of this is exhausting, causes pain and puts me at risk of hip and back problems.
Although I am receiving treatment and therapies for my condition, my muscles are continuing to tighten.
An operation in the USA would be life-changing for me! It will help me to straighten my legs and stand, walk in my walker and prevent pain associated with muscle tightness.
The fundraising campaign, is an effort to raise funds to fly me and my family to the USA, where I can receive SPML surgery.
The surgery, will take place in Texas, and will reduce spasticity and improve my comfort while sitting, standing and walking.