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Helping Ava

Organized by: Steven appleby

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THE STORY:

On 29th July 2014 our beautiful daughter Ava Mollie Appleby was born. When Ava was born she was a code blue (unresponsive, not breathing) after the nurses and doctors worked on Ava for 8 minutes they managed to bring our little girl around. Ava was then sent straight to neonatal due to her health defects. That first night mum slept alone in a ward without her baby next to her.

The next 24 hours were full of dread and upset. A consultant came to see Ava and told us that he believes she has CHARGE Syndrome and sent her to Great Ormand Street hospital, this syndrome varies in every case and our poor little girl seam’s to have got a lot of it.

Some of the effects Ava has suffered from this syndrome include Deafness, unable to breath by herself, unable to swallow, no nasal passages, facial paralysis, possible brain damage, possible blindness, growth problems, deformed ears, deformed jaw.

To hear from a surgeon that she has this destroyed us, knowing that we wont see our daughter smile crushed us at first but since then we have learnt to accept this as gods nature. And we know that with our love and support she will be just fine.

During her stay at Great Ormand Street nurses on a certain ward inserted an incorrect tube using an incorrect procedure, because of this Ava’s bowel was pierced causing blood poisoning and possible meningitis. She was sent straight to intensive care and treated with 6 medicines and received 2 blood transfusions but we are happy to say she has come off the medication after 4 weeks and is still fighting.

Every day is filled with dread and the unknown, it seems to be that every day we find out something new with regards to our daughters condition. Her stay is indefinite, no one can put a timescale on such a rare and complicated syndrome.

Mum has come to terms that working is no longer an option, when Ava comes home she will need full-time care, feeding through a tube, and oxygen. At the moment mum and me are spending close to $400 a week on travel to see our little girl but, this is no longer an option due to finances. In the last 8 weeks we have used whatever savings we did have and have now come to an end. Unfortunately I can only see our girl on weekends, as I have to work to make sure that when Ava comes home she still has a place to call home.

The Future for our girl is still unknown but up to this very moment I know that she is still fighting. I would like to thank you for reading Ava’s story and if this campaign comes of nothing more than allowing Ava to have her mum by her bedside very day for the foreseeable future. It would mean the world to me.

Thank You

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Organized by

Steven appleby

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