Hi everyone.
Yesterday, we got the news that we had feared, but hoped we wouldn't get. The genetic tests came back and Julia has been diagnosed with Trisomy 18 (Edwards Syndrome). It's in the same group of syndromes as Downs Syndrome. Unfortunately, the life expectancy is much shorter though. The large majority are not even born alive. Half of those born alive die within the first week - so we're grateful to have made it to day 6 so far. Around 90-95% of these babies don't make it to their first birthday. There is a small glimmer of hope for us that we're hoping for right now. About 1% of those born with this can live into their early teens and beyond - although they're generally totally dependent for their care.
So right now we're at a complete loss of what to say, do, or think. We gave her a name and a blessing today with our family and had some family photos taken. It's hard because we just have no idea what to expect. She could likely pass any day or hour, or there's a small chance she'll live much longer. We do feel so blessed to have her in our family for whatever time we get. Right now we really just feel like every day is an extra gift. She is precious.
Thanks to everyone for your support and prayers. We have truly felt lifted up in this hard time. Please keep praying for us.
7 comments:
Matt and Sheryl,
So sad to hear of little Julia's condition. You sound so strong and calm in your blog. You have such exemplary faith. My thoughts and prayers are definitely with you. We love you and your little family. Aunt Bev
I'm glad I was able to take a few very special moments and memories for you today, what a beautiful little girl Julia is, really she is so precious, I just kept having to smile seeing her and as I watched the tender moments between you all. Thank you for allowing me into your lives at such an emotional and trying time and thank you for letting me meet your perfect girl. We will keep you in our prayers!
Matt and Sheryl,
So sorry to hear about your bad news but am grateful that we have the church to help through these difficult times. You are very strong and Julia is very lucky to have you both as parents. She feels the love you have for her. Time is precious, spend as much time you can with your beautiful angel and know that you have people who love and care and pray for you and your family.
We all love you very much Sheryl and if there is ever anything we can do, please don't hesitate to ask. The Lord and Spirit are with us at all times.
Tina
Hi guys, I know it's a hard time right now, not knowing what to do. I had a friend in the same situation, they told her to go home with her son, she wasn't prepared at all to bring him home. But they had years of memories with him. And another lady -- Susan Budd, here is her blog-
http://buddzoo.blogspot.ca/
Her sweet funny daughter is now 4. There is hope. Make memories, enjoy every moment. you guys are in our prayers. stay strong
and one more thing, if your interested. because of this special situation your in, you could contact Now I Lay Me Down To Sleep and someone could come take professional pictures of Julia and your family. I love mine, they are my treasure. For us, Having Adeline has been the hardest but best thing for our family. Makes the plan of salvation that much more real and the temple, I'm more closer to her there.
ok, I'm done. take care and enjoy your sweet piece of heaven.
-Dyane
We love you guys so much, and it's nothing compared to the love that Julia or Heavenly Father have for your family. It's sad that your family has to go through this trial and little Julia has so much to go through, but I know that it's a blessing for both her and you guys to have as much time with her as possible.
She's a special spirit, with a very special family. You're in our thoughts and prayers, and we hope you have as much time as possible with your sweet baby girl.
I'm so sorry to hear this Sheryl. We just got back from a family vacation and so I just heard this news this morning and have been crying for you and your family. I'll be praying for you and am here to help however I can ok.
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