The Butterfly Wishes Network

Katie Hughes

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Katie Hughes

Post by Butterfly Admin Liz on Fri Jul 08, 2016 9:52 pm

This message was sent from:
http://www.butterflywishesnetwork.co.uk/family-application
------------------------------------------------------------
Name of sender: Katie Hughes 07793974880

Address:
19 First Avenue

Dunstable
Befs
LU6 3AJ

Email: Wildwesty77@hotmail.com

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

Our son Jake is 2.5 years old. Last year he was diagnosed with Alpers Disease, a life limiting mitochondrial condition.
He suffers seizures and muscle weakness.
At the end of march he had a huge seizure which put him in PICU at Gr Omond Street. We spent 6 weeks in hospital and were discharged via our local hospice for restpite.
Jake hasnt really recovered this time. He has no head/neck control, very limited movement in his limbs and is now fed through a tube.
In the last 2.5 weeks he has been asleep near constantly and consultants believe this paired with high liver function tests is thr start of liver failure. They expect us to see more symptoms show in the next few weeks but ultimately we are just waiting to see what happens.

I am 8 months pregnant and due in three weeks. I would love either photos of Jake or if possible precious pictures of him with the new baby.


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

Jake has no mobility, but i can get him out and about in a pram or car.


Butterfly Admin Liz
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Re: Katie Hughes

Post by Butterfly Admin Liz on Fri Jul 29, 2016 7:28 pm

Child passed away.

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