Rett Syndrome Association of Australia | Alana
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Alana

 

Alana in hospitalMy beautiful baby girl Alana was born in 1983 with her first 10 days of life being spent in hospital as she had difficulty with feeding and gaining weight. Over the next 12 months, she was in and out of hospital because of poor feeding and intense vomiting. Lots of tests were done but none could determine the cause (s). Even so, during that time Alana was a very happy baby who achieved the developmental milestones of sitting, smiling, crawling, word use and play, but by her first birthday, I was becoming concerned about her. Something definitely wasn’t right as she was losing skills, so I sought out doctors looking for some answers. However, I was told that there wasn’t a problem, just a bit of global developmental delay, and that by the time she is of school age she will be same as her peers. Alana started having seizures at 3 years of age. It was then that she was given a diagnosis of Rett syndrome but only after a lot of effort on my part trying to find out what was amiss with her.

As a 4 year old, she attended kindergarten with a one-on-one aide to assist her as was the case during her primary school years when she was a student at a mainstream school for 3 days a week which she found very stimulating. The other 2 days were spent at a special developmental school (SDS) where she would receive therapy.  Her secondary years were as a full-time student at an SDS with the horse riding, swimming and music programs, being her favourite activities.Alana smiling

Alana enjoys being out there and enjoying life to its fullest with her family. Some of the specialty things we have been able to enjoy together include downhill snow skiing with Alana in a sit ski, trips to Disneyland, and jet skiing.

Presently, Alana who is wheelchair bound, has a number of health issues with the worst being her epilepsy for which an intense action plan is in place. She also suffers from hypothermo regulation (irregular body temperature), central apnoea (breathing stoppage), osteopenia (bone mineral deficiency) and scoliosis (curvature of the spine). She has a gastrostomy tube in her stomach for hydration. To date, we would have had over 200 hospital admissions, mostly due to her seizures.

Alana is much loved by anyone who has the opportunity to get to know her. She enjoys her younger sister Alice and baby brother Benjamin. By using her fantastic eye contact and facial expressions, she can indicate her needs.

Alana has enriched our lives. I am blessed to have a very placid daughter who has undergone surgeries and numerous investigations, endured pain and suffered many seizures. She never ceases to astound me with her amazing inner strength and determination. Alana has many a time defied medical predictions given by doctors. So I feel that we must always believe in our girls and never give up on them.

Liz, Alana’s mum
March 2014