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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'.
4 comments:
Jolene,
I am glad you have some nice quiet time, try and enjoy it! Sorry to hear Alex will be away for another two weeks..I don't know how you do it, but you are amazing.
Thinking of you.
Dana
I have been following your blog for a bit now and I have to say that you are SUCH and amazing mom, wife and woman!! Your angels are so lucky to have you.....keep your head up and stay strong...prayers for you from my family to yours!!
Melanie Friesen (Jay's wife....not sure if you remember us)
Relax!! Eat some chocolate! Take a day off :) You deserve it.
Well, you could call the MICU and we could put you on speakerphone!
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