AMY’S STORY so far ...
On the 15th of March 2001, Amy Hana Chelsey Jarrett arrived in this world after a perfectly normal pregnancy and delivery. When Amy was put in my arms I knew there was something not right, her little eyes were rolling, dark and empty and she felt floppy like a doll to hold. I remember thinking "this doesn’t feel like when I had my son” - Lewis 4 years previously.
Nurses reassured me that she would stabilise after she had fed. Apart from her temperature her general checks seemed to be okay. After being transferred to the maternity ward with all the other new mums, my worries continued, she felt different to me, non-responsive and almost alien like.
At 7am the next morning, I saw Amy turn scarlet in skin colour and screamed to the nurses, next thing I knew I was watching my new baby girl being resuscitated in front of me surrounded by medical staff.
At the time GOSH was full so to get a foot in the door we were transferred to University College Hospital in London for further investigation. Here she was given a CT scan and we were told that Amy had abnormalities in her brain and that her optic nerves were not visible on the scan. This is where our world fell apart; the doctors gave us the devastating news that Amy was most probably totally blind. Sitting outside the hospital watching everyone rushing by we felt like our world has stopped. I can only explain the feeling as bereavement, for your hopes and dreams and the future of your new baby. The following day we were transferred to GOSH where we were to remain for the next 8 weeks, we had to uproot our family and move into long term family accommodation. Lewis had to attend school in the hospital after only joining his own school a few weeks before, he was only 4 years old at the time. After long agonising weeks of not knowing what was happening to our baby girl, doctors finally diagnosed Amy with Septo Optic Dysplasia. This condition was completely unknown to us. It meant that Amy’s midline brain had not formed during my pregnancy causing her to have a small septum pellucidum, corpus collosum, hypothalamus and very few optic nerves. Also her pituitary gland had not formed therefore she couldn’t produce her own hormones such as growth hormone, thyroxine and hydrocortisone. I know! That’s how we felt! What did this all mean? We were given tons of information booklets and started to learn about SOD. It meant in layman terms, that Amy was completely blind, was hormone deficient and so required life long medication, and that there was the possibility of severe learning difficulties due to her mid-line brain defect and blindness. A daunting prospect for any parents to hear but we loved Amy even more and whatever was to happen, we would deal with it somehow. The only thing we weren’t given much of was hope. There was nothing we could do to help her. Finally on May 29th we were able to take our baby daughter home with us, but the unknown still continued as the condition was so rare and varied vastly so her prognosis was very difficult to predict. ...Amy is now 8 years old and has developmental delay in all areas. She is a happy and energetic girl who loves to jump, sing, and laugh! A laugh that is extremely infectious! Just like her cuddles and kisses! She likes things to be routine and run smoothly as unexpected situations tend to upset her, and she likes what she likes! And not alot else! She has her own way of interacting with you as her communication and language skills are limited. Her unsighted world is a far cry from what we take for granted. Amy suffered from a disrupted sleep pattern as a baby and could not feed normally so was fitted with a gastrostomy, and tube fed. Her medical problems persisted with further convulsions and visits to the hospital. She did not stabilise until she was 4 years old when she suddenly became like a little person rather than a baby. Amy started at nursery with a one to one support worker, and eventually began at her current special needs school. She was diagnosed with autism also in 2006, which affects her communication and social skills, which combined with her blindness, mid line brain defect and hormone deficiency makes everyday life beyond challenging for Amy and our family. She can be unpredictable and become very angry very quickly. She strikes out and it takes a while, but our Amy comes back to us eventually! ...On the 22nd of January this year we saw an article in the Mirror Newspaper that changed everything. A possible treatment for Amy. A little girl called Dakota Clarke had gone for stem cell treatment in China, and she has the same condition as Amy. We began jumping around like headless chickens and crying at the same time. Here we were reading that there was hope for our little girl, but at the same it was so surreal. Immediately we started to research this treatment and Dakota. She was to be the first British child to receive this pioneering treatment. We contacted her parents and followed her trip to China where she was to undergo a groundbreaking procedure to have umbilical stem cells administered over the period of a month. This was a success! Dakota now has a little vision and she is improving every day. Thanks to her family getting their story in the newspaper we now have hope! Other children have had this treatment and all have been successful in improving their quality of life in various ways. |
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