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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'.
14 comments:
what a beautiful story---what a beautiful girl--what a beautiful family you have and what a beautiful attitude you have.We pray that your Birthday wish for Hope's smiles to come back, will be granted.You all deserve that.Thank you for sharing that.
John and Helen Hiebert were the anonymous who published that comment. I'm not always sure hoe to do these things.
Happy Birthday Hope!!!! We pray your Birthday wish to come true.
Thinking of the five of you lots,
Nicole Fischer and family
Wow- what a beautiful collage of memories. What a beautiful daughter you have. Her smiles are so precious (and I adore the little pigtails). Blessings on your birthday, Hope.
Beautiful. Praying for a wonderful day.
Happy Birthday Hope!!
Happy Birthday Hope. I know that was hard for you to put together Jolene. What beautiful smiles she has given you and I hope that with med changes you get some of those back. She truly is one beautiful little girl and VERY lucky to have such wonderful parents like you and Alex....you should be proud of yourselves.
Happy Birthday Hope!
I just started reading your blog and although I haven't been for long I was so touched by this wonderful tribute to your precious girl. I pray for Hope's smiles to return, to give you the strength to fight this fight....you seem to be doing a great job!
Happy Birthday Hope!
GOD'S BLESSINGS!!
Happy Birthday Hope!!
Thank you for the beautiful collage Jolene.
Beautiful slideshow! Happy birthday, Hope. We love you lots.
That slideshow is so touching, I pray also that Hope will smile again without seizures. She's so adorable!
Love,
Kyla
Happy birthday little Hopey. Hope to see you and your smiles soon.
Auntie Deanna
I love it Jolene. So glad you were able to post it. It is so beauitful. Even better the second time seeing it.
T
I have just seen your video now. It was just beautiful. I wish you and Hope birthday wishes. love Jenn
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