The Butterfly Wishes Network

Amy McMurdy - Olivia

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Amy McMurdy - Olivia

Post by Butterfly Admin Liz on Fri Mar 11, 2016 3:12 am

This message was sent from:
http://www.butterflywishesnetwork.co.uk/family-application
------------------------------------------------------------
Name of sender: Amy McMurdy 07730601318

Address:
11 Grange Lane
Bromham
Bedford
Bedfordshire
MK43 8NR

Email: amymcmurdy@live.co,uk

------------------------- About the Family -------------------------

Olivia was born on the 12th of July 2012. She had to be resuscitated at birth. An MRI showed multiple brain malformations and we were told it was unlikely she would reach 1 year. To take her home and enjoy the beautiful girl we had before us today. Through numerous battles, we have exceeded those expectations. Albeit a rocky journey. Every once in a while, she will remind us that she is not our forever girl as we battle for her.
When people say "she's one in a million", I feel like I should correct them with "actually she's one in 7.4 BILLION", as a genetic 'blip' (sounds better than mutation), found in Olivia has not previously been recorded, globally. Due to this and the Hypoxic Ischemic encephalopathy at birth, Olivia is tube fed, blind, non-verbal, wheelchair user. She has chronic lung disease, a small and floppy airway (causing frequent apnoeas. She stops breathing on average 14 times per hour, varying from 12 seconds to 2 minutes). She has epilepsy and daily seizures. She has pituitary hypoplasia, so along with an inability to control her temperature (causing secondary hypothermia on occasions, especially when unwell), she does not produce enough growth hormone (which is more than just about height), she has unstable blood sugars (frequent hypoglycaemic episodes) and also adrenal insufficiency. This requires close monitoring as even the smallest illness (a cold or sickness) could be extremely serious to Olivia. She also has scoliosis and osteoporosis, so we try to keep manual movement to a minimum and rely on her hoist.
When asked "what condition", I was going to just copy and paste a list from the 'Olivia guide' (a guide I created to give to doctors on each admission, to save their time and my sanity), but I decided not to, as she's so much more than just a list of diagnosis/medical issues, she is beautiful and smiley, our daughter/sister and very much loved. Always will be.


------------------------- In support of the application -------------------------

Since Olivia's arrival, we have once tried a studio shoot, to capture us as a family, to keep forever. In short, it was a disaster. There was no understanding or provision for Olivia's needs despite me explaining beforehand. So the whole episode was quite upsetting and VERY stressful. So when I look at those (now two years ago), I remember how I felt when they were taken. Also, we have an extra family member (Jessica) who is 8 months old. I constantly worry that should we have to say goodbye to Olivia, sooner rather than later, she wouldn't be able to remember her sister. I take lots of pictures of my children myself, but I also don't have many of me with Olivia.
We can get to places, but would have to be wheelchair accessible, as Olivia also has a lot of equipment on her chair too. If comfortable and appropriate seating available, we can get her out of her chair for a cuddle, but the adults seat would need to be more than a stool, a dining chair or a bench, to enable us to do so. She cannot lay flat, but she does have a large wedge we can 'camouflage' with a sheet/cover, and other home seating we can cover too.


------------------------- Sponsor Details -------------------------

Rachel Buggy
Nurse (retired) Carer
07949922744

Or the GP surgery (Dr Wilson or Dr Passmore)
01234-244000

Community Nursing Team (Ruth Mason or Liz Hillier)
01234-310103

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Butterfly Admin Liz
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Re: Amy McMurdy - Olivia

Post by Butterfly Admin Liz on Fri Mar 11, 2016 3:54 am

Fb message to mum asking her to fill form out as email bounced back.

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Re: Amy McMurdy - Olivia

Post by Butterfly Admin Liz on Fri Jul 29, 2016 7:47 pm

She was going to fill form in, hasn't, just sent another message asking if she still wants the shoot.
Chris is covering will have to look on map for his last name think it's chris demott if they still want the shoot.

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Re: Amy McMurdy - Olivia

Post by Butterfly Admin Liz on Fri Jul 29, 2016 7:51 pm

Yes does want shoot, she doesn't like filling forms in.

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Re: Amy McMurdy - Olivia

Post by Butterfly Admin Liz on Tue Oct 25, 2016 8:58 pm

Passed away, message onto fb page, she says she just didn't fill the form in.

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Re: Amy McMurdy - Olivia

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