nina davis – nina’s journey
Nina had her first seizure at 5 weeks of age and since then has continued to have seizures on a daily basis. She is such a brave, courageous little girl, who now at the age of 4 years, continues to bring so much love and happiness into our family, we are truly blessed to have her. The amazing doctors at PMH/ PCH have worked tirelessly to help our family find a diagnosis for Nina’s condition, however to this date, she remains undiagnosed with the overarching pseudo – diagnosis being an ‘epileptic encephalothopy’. Nina’s genome is currently being studied at the Telethon Kids Institute and we hope one day we’ll have an answer to her diagnosis.
Nina’s seizures have halted the development of her achieving skills such as walking or talking. The seizures can also be contributed to her extremely low muscle tone which has required her to undergo some painful surgeries to help correct some of the problems resulting from her weak muscles. Nina is such an amazing girl though, that despite what she has to go through she doesn’t complain, but just gets on with things.
Nina’s swallow reflex has gradually became weaker with her low muscle tone, that she began to silently aspirate (when the food goes down the wrong way). Nina underwent a gastrostomy procedure earlier this year and now she can be fed directly into her stomach via a Mik-e button, to ensure that she can be fed safely, without having to deal with any nasty chest infections.
Nina has commenced Kindergarten this year at Sir David Brand School in Coolbinia and has just now consistently started to smile more often. Every smile Nina gives is simply priceless and makes her family so overjoyed with happiness to see. Nina loves listening to music and is beginning to use a switch more proficiently to play music and access toys that light up and make noise. Nina is able to access the visiting teacher from the specialist branch of the Education Department, known as Sensory, to help Nina engage in activities to stimulate her vision. This is most useful as Nina’s condition includes a cortical vision impairment.
Nina loves to relax in her amazing new chair that the Saba Rose Button Foundation (SRBF) secured for Nina. This chair is so amazing because it enables her to be posturally supported where she needs it, whilst also being able to recline and relax at a height better suited to interact with her toys.
The SRBF has so kindly further supported our family through the help of an EN (Enrolled Nurse – Emily) once a week for 6 months. Emily was always such a delight to have in our home and her assistance was just so pivotal, especially since Nina has a baby sister to keep her company! Emily supported Nina with her switch toys, physio program, feeds, medications along with accompanying us to medical and physio appointments. She also did a wonderful job at keeping Nina’s little sister smiling and busy playing with her big sister, allowing Mum to take a coffee break.
Our family is so blessed to have been supported by the SRBF and we are eternally grateful for everything they have done to help make Nina’s and our family life all the richer. We thank the SRBF from the bottom of our hearts for their help they have given our precious girl.