• Ava's Angels posted an update 1 week, 3 days ago

    Hello,

    By way of introduction, I am the Chair of The Board of Trustees for a newly formed charity, Ava’s Angels – registered charity number 1179168.

    My beautiful daughter, Ava Elizabeth Akers, was a healthy 3 year old girl enjoying every aspect of life, always smiling and perfect in every way. Whilst on holiday in the Maldives with my wife and Ava back in March 2017, Ava became unwell but with what appeared to be ‘normal’ cold like symptoms, however, after a couple of days she very rapidly deteriorated and fell into a coma. Shortly after, we were evacuated to Bangkok where it was established that Ava had contracted an extremely rare form of the very common Epstein Barr virus (glandular fever), which impacted her brain (encephalitis). After 3 and a half weeks in Bangkok with Ava stable but remaining in a coma, we were again evacuated to the UK where Ava was admitted to Stoke General PICU and then Birmingham Children’s Hospital, where we were inpatients for 4 months.

    There is no immunisation or treatment against the Epstein Barr virus and in general our bodies on their own overcome the virus, however, we exhausted all options to give Ava the best possible chance of recovery. Epstein Barr Virus Encephalitis affecting children is so rare that none of the Consultants we met from the UK and overseas have ever seen a patient with this condition, and cannot explain why this happened, which is very difficult for me and my family to understand. Why Ava? – a question they have said from all the tests they can’t answer and even in years to come may never be answered. After this short battle, our beautiful girl – Ava – passed away on the 29th July 2017.

    During our time in hospital we were extremely lucky to have family and friends that supported us while we lived at the hospital bedside with Ava, bringing us food, supplies and emotional support in what was the worst time of our lives.

    Inspired by Ava and seeing the importance of support whilst caring for a poorly child, Ava’s Angels (a local chartiy) was established in March 2018 and provides support to families of sick children during hospital stays, helping them to spend more time caring for their child.

    Birmingham Children’s Hospital (BCH) Launch: We have recently been working with BCH and will have an official launch on Saturday 6th April.

    • Good evening Ava’s Angels.
      I have private messaged you as I do waffle on but welcome on board VIPMums, looking forward to hearing more about your charity and to share where we can!to
      Catch you around from Netty x

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