Personal Stories and Inspiration
We have been collecting stories and photos from our member families and have a few to share with you.
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Sarah Holten's Story
Sarah Holten was born 31st Oct 93, she was a delightful baby, placid, sleep well, too well! She never crawled, but walked at 9 months old. She was very active, could use a spade and bucket at 18 months old, was finger feeding herself.She loved to climb on chairs, tables, benches.
At two she was starting to bite her thumb more and more but only when she was having what appeared to be a tantrum. She was losing her hand function, looking back she was having trouble lifting her ride on toy up the few steps into the house, which she had been doing in the months beforehand. And holding things for periods of time.
She seemed to be happy around other children but was not doing alot of fine motor activities like building blocks, if I tried she would get angry. She was talking in singular word, like mum, Dad, nana, Milo, car. She was quite social still, but started to become more in her own world at times.
At 2.5 yrs old she had repeated the words from a picture book "baby lamb" several times during that day, the next day I brought the same book out, but nothing and never said those two words again. Her biting was becoming more aggressive and frequent. At age three she could still manage stairs well, now she won't attempt them without assistance. I was starting to think she was acting like this due to living in a violent relationship at the time. we got out that situation and went to see our GP who referred us to a Peaditrian. Sarah was diagnosed with Rett Syndrome in Dec 96. She was having terrible sleep patterns, screaming a lot, aggressive, biting, banging her head alot on anything, twisting and pulling out the hair above her ear. She now required arm-bands to protect her hands from the hand biting and mouthing. Which looking back was one of the best things for her, She was always stopping and looking down with her hands in her mouth, the armbands curbed this so she was standing straighter, and most of all looking straight ahead, which I think helped her with eye contact. However she was suffering with undiagnosed reflux and properly Gastritis. She has had a huge problem with swallowed air, which I'm sure was happening back then too. I was very uneducated about constipation then too She could jump very well on her tramp until she had a injury to her foot 3-4 yrs ago. She never regained back to were she was, but are very lucky to have her still very mobile. She had surgery for heel lengthing July 05, which went well and saved her mobility. She has a mild Scoliosis.
She is still a social wee angel, she loves people, music (Bob Dylan, The Corrs, Eagles are favs), food and nature, and most of all hugs:))) Eye pointing is her strongest tool for communication, along with her vocal sounds and body language. She loves her little brother a lot and has good interactions with him, which is lovely to see.
A very special soul spreading a tiny big secret about life...LOVE:)))