Today Kaitlyn had a wonderful day. She didn't have a single episode where she stopped breathing or her O2 dipping! We even got to sit out on the porch again and enjoy the breeze. While we were outside, we found the most beautiful rose on our rose bushes and picked it for Kaitlyn's special friend Sarah.
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| A rose for Sarah |
One year ago, on August 30th, 2010, a precious little girl named Sarah Elisabeth Glassman, went to heaven. She, like Kaitlyn, also had Niemann-Pick Disease, Type A. She was 3 years and 7 months old when she passed. We never had the honor of meeting her but we feel like we know her and that she is a part of our family.
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| Sarah |
Over the past year, we have become friends with Sarah's parents, Valerie and Aaron, two amazing people. They also have a son, like we do, who does not have the disease. They have helped us in so many ways in understanding what to expect with the disease and in sharing their experience with us. Even though Sarah isn't here on earth, her spirit and her purpose is still here through her family, who are continuing to help others, like us.
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| Sarah and her little brother Zachary |
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| Kaitlyn and her little brother Cole |
Niemann-Pick disease in itself is so rare, especially Type A. Currently, we know of only 3 other children who have Type A in the US who are living. To be able to meet the Glassman family, spend time with them and have them as friends has really helped us through this journey.
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| Sarah |
Kaitlyn and Sarah are definitely soul sisters, I have no doubt about it. Really, they look like they could be real sisters! There are so many similarities between the two it is amazing.
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| Sarah |
Knowing that what the Glassman family is going through right now, the joy in honoring their daughter and the sadness of her loss, is going to be us one day really hits home. My heart aches for them and for us. Please say a prayer to lift up the Glassman family during this time and to fill their hearts with the joy of everything that is their sweet and precious Sarah.
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| A rose for Sarah |
That was the most beautiful post Deanna! Amazing kids ... Xxoo steven, shannon and wylder
ReplyDeleteThank you Deanna for the sweetest post about our beloved Sarah Elisabeth. Today was a very difficult day, many times I've cried. But then again we were so blessed to have had Sarah for 3 years and 7 months.Sarah was a fighter and taught us so much during her all too brief lifetime She was an amazing child and Valerie and Aaron amazing parents. My heart breaks for them. I only wish I could take their pain away. Thanks again for your kind words.
ReplyDeleteThat was such a beautiful post! We have been keeping your family in our prayers and so love the updates on Kaitlyn's days. We will add Sarah's family to our prayers as well and pray they find comfort and peace this week. She and Kaitlyn do look like they are sisters in the pictures! Thank you for sharing your journeys with us. You are such a blessing to us.
ReplyDelete-Michelle, Brian, Teagan and Isla