The last few weeks my memory app on Facebook has been full of me harassing people to either sky dive or sponsor the divers, so I have been constantly remembering the beautiful brave Lili J Tasker or Lili J Balboa, named so because of her strength and fight. So I thought it was time to share her story.
I remember like yesterday chatting to my friend in Farmfoods when she told me her grandaughter Lili was being tested for Aicardi Syndrome a rare life limiting neurologic disorder, suffered exclusively by females. The hospital had been slow to pick up on the signs and Lili’s amazing mother was already pregnant with another girl before the diagnosis was made, thankfully Poppy did not have Aicardi. I said I would like to help if I could, and the minute I made eye contact with the gorgeous Lili, I knew I would fight tooth and nail to ensure this beauty lived life to the best of her ability as painlessly as possible, when you have parented a special child you can see past the body thats failing them, you communicate through the eyes, I never thought I would feel that communication with another child, but the second Lili gave me that look, the look only her family saw, I felt an instant bond.
Initially we decided to fund raise to get an adapted car seat and pushchair, at the time i was still helping a different family and at the end of a degree, so asked another local fundraiser to donate the proceedings from a walk and event, in memory of beautiful Caitlin, who was taken too soon in a car accident, and promised I would help where I could. I was in charge of catering, borrowed a big barbecue and drafted in an ice cream van, while approaching businesses for raffle prizes. The day before the event my daughter was seriously ill with multiple bi lateral haematoma’s (blood clots) related to giving birth 6 days before, so after 23 hours at the hospital, i got my other daughter to cover and dashed to the venue, I couldn’t do the sponsored walk but had the barbecue up and running for the walkers, after a quick cuddle with Lili, I was back to the hospital. The event was successful and Lili’s car seat and buggy were purchased.
Lili suffered multiple life threatening debilitating convulsions every day, which were reduced drastically when Lili was relaxed with sensory equipment, so I decided it was time to get Lili her own sensory room at home where she was more relaxed with her parents, sister and massive extended family, who all helped with Lili’s care, and loved her unconditionally, I will tell more about this is part 2.