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Ashley and Hope were born with Adenylosuccinate Lyase Deficiency. This metabolic disorder left them with a damaged brain resulting in seizures and profound psychomotor delay. They were not expected to live past infancy. Although they were palliative care, we kept them at home to love and hold. Ashley died on March 18th,2011 (6yrs old) and Hope followed her home on August 14th, 2011 (4yrs old). We now continue our journey as a 'Family of Four'.
Common Interests...
Blog Archive
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2008
(90)
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October
(23)
- Happy day
- Hanging Out
- Grab the camera
- Car rides are good
- Poor Hope
- No change
- Loving the smiles
- Nothing new
- Brod & Ash playing
- EEG yesterday
- Seizures are the 'norm'
- Happy Thanksgiving
- Sleeping
- It just gets worse.
- Still sleepy
- Sleeping
- Lethargic
- To ER
- Not Eating
- Rehab for Children
- Unsure
- Smiles...seizures...puke and poo!
- Time in the Sun
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October
(23)
4 comments:
we're praying for all of you and thinking of you often.
We are praying for you.
Nicole and family
Hi Jolene and family,
I have not commented for a while but I would like you all to know that we check your updates daily and think of you all the time. We pray for all of you and hold you close to our hearts. Love Lorraine, Zenon, Aurelie & Hannah
Here in prayer. My heart is with you all.
Love,
Gail
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