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FA142 - Charlotte Smith

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FA142 - Charlotte Smith

Post by Guest on Tue Apr 01, 2014 9:49 pm

------------------------------------------------------------
Name of sender: Charlotte Smith (Parent) 01553 277868/07769 279347

Address:
6 Franklin Way
Watlington
Kings Lynn
Norfolk
PE33 0TZ

Email: cmsmith89@live.co.uk

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

Harvey is 10 weeks old and has been diagnosed with SMA (Spinal Muscular Atrophy) Type 1, the most severe and life limiting of these group of disorders.

More information on the condition can be found on the Jennifer's Trust website, http://www.jtsma.org.uk/ but in short the condition means that Harvey's motor neurones do not connect properly from his spine to his muscles and so he presents as a 'floppy' baby. This condition will deteriorate over time. In general babies diagnosed within the first few weeks or months of life have a significantly shorter life expectancy.

Harvey is no longer able to feed safely and so has a nasogastric tube into his tummy to feed him instead. He also requires continuous oxygen via a tube to maintain his blood oxygen levels and breathing.

Harvey is significantly life limited and most babies with this particular condition will have a life expectancy of up to 12 or 18 months. Some babies do not survive this long as they are vulnerable to chest infections due to poor muscle function in breathing.

There is no direct treatment or cure for SMA. It is a genetic disorder.


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

Charlotte, her partner Alex and big brother Alfie (2) would like to be connected to one of the Butterly Wishes Network Photographers in order to make a record of Harvey's short time with his family.

Harvey may only survive weeks or months and so the family would like to gain some beautiful images to remember Harvey by. These images will also provide memories for Alfie, who may have limited memories of Harvey in the future due to Alfie's age.

Harvey can be held by his family and moved around in his environment. Harvey may not be able to lye on his front due to the difficulties in breathing, but is happy on his back. Harvey does not cry out loud due to muscle weakness, but his facial expression demonstrates when he is distressed.

Charlotte's father is a harbourmaster at Wells-Next-the-Sea, and if possible (weather permitting) the family would like to make a trip there for the photography. This is also where Harvey and Alfie were Christened together a couple of weeks ago, so is a very special place for the family.


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

Please in the first instance contact Charlotte Deeves, Family Support Practitioner at East Anglia's Children's Hospices, Milton, on 01223 815104 or charlotte.deeves@each.org.uk.

The family have requested Charlotte Deeves to manage incoming calls where possible to minimise the number of calls they receive. However, they will be very happy to speak to the photographer once arrangements have been made.

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Re: FA142 - Charlotte Smith

Post by Guest on Tue Apr 01, 2014 9:50 pm

Rushing this one through ladies, it's the one that came in through NILMDTS.

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Re: FA142 - Charlotte Smith

Post by Butterfly Admin Samira on Wed Apr 02, 2014 7:44 am

yes

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Re: FA142 - Charlotte Smith

Post by Guest on Thu Apr 03, 2014 5:56 am

Details sent over to Jessica Wilkins

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Re: FA142 - Charlotte Smith

Post by Guest on Mon Apr 07, 2014 7:48 pm

Poor lil sausage

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Re: FA142 - Charlotte Smith

Post by Butterfly Admin Samira on Wed Apr 09, 2014 10:53 pm

Sadly passed Sad

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Re: FA142 - Charlotte Smith

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