Sunday, 28 April 2019

Story Alyssa

One of the main reasons we created and was to try and create awareness through Alyssa's story of brain damage and otc Deficiency Here is a Video of Parents giving a short verbal account of what happened to Alyssa on the BBC in 2013.

Story Alyssa

Update since for 2019

Alyssa’s Fundraising campaign in 2013 helped her get the therapy she needed at that time, after a year and a half of fighting MCH, the ombudsman ruled that there had been an injustice to Alyssa when her therapy was reduced, The LA Then agreed Alyssa’s finalised Educational statement which converted into her ECHP in 2017 which currently now in physio/SALT and OT, gives Alyssa what she needs !

Alyssa brain damage is a very tangible thing, at the start we had hoped our little girl would fully recover but after many years of hard work from Alyssa, us and Therapists it's clear the damage is going to be life long and sadly impact her significantly needing 2:1 constant 24 hour care for the rest of her life, although the Therapy has been vital in improving her quality of life as she could do Absolutely nothing after her brain injury, we are grateful the therapy has given her the ability to roll in bed so she isn't stuck in one position, being able to transfer instead of being hoisted, she can sit unaided, high knee crawl with help, her reaching and fine motor are continuing to improve, She likes to reach for toys if i hold them, she is beginning to explore immediately around her for toys if i squeak them, she can feed herself with hand over hand support, and drink from a straw, after Alyssa's brain injury she was tube fed, and was not expected to fully eat orally again, now we do not use her tube for food unless she is ill or asleep, she is now smiling and laughing, as well as frowning and sighing, we miss her talking as the rare times she did speak we were told was automatic responses that she had no control off, we are working on non verbal communication right at the basic level to help make choices with objects of reference, Alyssa is still unable to make choices, we are hoping to improve this with the objects of reference, she cannot currently give a simple yes or no, these are our Major speech therapy goals that we continue to work on

Unfortunately a year after we created the video above Alyssa developed complex epilepsy from the scar tissue of the brain injury, this has impacted Alyssa hugely, as her seizures are not controlled, and we have been told they likely never will be. Her therapy is vital still as it stops her losing the progress she has made, and although it will never cure her or undo the brain damage it helps her gain progress in tiny increments within the perimeters of her brain injury.

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