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.

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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.

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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.  

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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.

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Although I am receiving treatment and therapies for my condition, my muscles are continuing to tighten.

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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.

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The fundraising campaign, is an effort to raise funds to fly me and my family to the USA, where I can receive SPML surgery.

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The surgery, will take place in Texas, and will reduce spasticity and improve my comfort while sitting, standing and walking.

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