Meet

Katie Dodsworth

Katie Alexis Dodsworth was born on March 17th 2007 in Darlington, Co-Durham, England, the daughter of Sarah & Danny. She was 5 weeks early & weighed only 3lb 14oz. Sarah had a difficult pregnancy, not with illness but with various scares over the baby’s health so we knew that things were not quite right, trailing back & forth to various hospital appointments.

We knew she had scoliosis & cysts on her brain but that was all we knew. When Katie was born her leg was dislocated badly, it almost looked as if it was back to front, she was put in the special care unit at Darlington Memorial Hospital & she was given great care. She was diagnosed with AS at 2 weeks old, a day that will live in my memory forever. We hadnt even heard of it & because its rare the doctors didn’t know all there was to know but they were great.
We checked out the AS website that night & were distraught, but over time as the shock wore off we learned to be more positive. We realised there are mild & severe cases & we prayed that if she had to have this then hopefully it would be mild, now though we know that Katie has it pretty severe.
She is a beautiful, placid baby, she very rarely cries & although shes content & happy most of the time she rarely smiles either, though you can see by her eyes that shes smiling, shes amazing.
She’s just over a year old now & like other Aicardi Angels shes been through a lot. She had hip dysplasia, she went into hospital, was put to sleep & had her hip popped into place then a spica cast fitted but they had to remove it as the hip popped back out of place again. They left her for a few weeks then operated on her on December 21st 2007, this time doing open surgery. She came out of the cast at the end of march 2008, at the moment she wears a brace but at least it comes off for bathtime & playtime, physio etc.
Katie’s blind in one eye & although we were told the vision in the other eye is fine, the doctors aren’t sure if her brain is receiving the signals that her eye is sending so we’re not sure exactly what she can see yet, I suppose we won’t know till shes older.
For us, I think the worst thing is the seizures. When they first started coming, even though we were luckier then some of the families because Katie was diagnosed early so we,d been told what to expect, its still so hard for anyone to watch any baby go through them. The start of them was the worst time of our lives, not knowing what to do to comfort her, not knowing if she was in pain, I cried everytime she had one, even though I tried to be strong for her & for Danny & Sarah.
Although I suppose we are used to them now, as her Nana, I hate to see her having them, even the smallest ones, to me, they are the worst part of the AS & if I had one prayer answered, it would be to make the seizures stop. Shes on Vigabatrin at the moment but there is talk of her coming off it before too long due to damage it causes to the retina,s, but she seems to be doing ok on it for now, the seizures are pretty much under control.
For the past 2 weeks shes been a bit off colour with a chest infection but at last she hasn’t had to stay in the hospital like she did when she was 3 months when she had bronchilitis but the doctors are putting it down to her teething as her little gums are all swollen & her cheeks are on fire a lot of the time, hopefully they’ll come through soon so she gets a bit of a rest because shes always been a good sleeper but at the minute shes really unsettled & not at her best.
I think thats covered in brief just about everything for now although if theres anything I’ve forgot I will add updates whenever I get time to get online. Please keep her & all the other Aicardi Angels throughout the world in your prayers as I always do.

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