A few weeks ago, I posted a video about the beginning of our journey with Niemann-Pick Disease. I had no idea how many people would see this video and be affected by it. The first week I had the video link on Facebook, I had over 50 Facebook Friends share the link with all of their friends. I don't know how many of those friends then went on to share it but I started to receive donations on Paypal and in the mail for the 11/11/11 Challenge. So far, they have been mostly from people we don't even know... but YOU do.
Just by doing something as simple as sharing Kaitlyn's video, we have already received over $1,200 that will go directly to research for Type A/B. This doesn't include any donations that were made directly to the Niemann-Pick Foundation in honor of Kailtyn. This wouldn't have happened without your help. Please continue to share Kaitlyn's video with others, whether it's through Facebook or email or showing them the video on your phone or laptop. It is making a big difference. With over 800 views on YouTube, that is A LOT of people who now know a little more about Niemann-Pick disease who otherwise wouldn't have a clue. The value of awareness is priceless. I have had messages from people saying that it has touched their hearts in a profound way and even some who said they were sobbing at work (sorry!). Just knowing that it has made an impact on their lives in some way, whether it be for an hour or a week or forever, makes me so proud to be Kaitlyn's mother.
As for Kaitlyn, she is doing well. Every day is different in how she is feeling. Almost every day she has multiple seizure-like episodes or episodes where she stops breathing. They don't last very long, a minute at the most, and we have been increasing certain medications, which seems to be helping. Today she didn't have an episode at all! It's been awhile since I could say that. Although tomorrow we could wake up and it be a completely different story! That's okay though, cause we still have her here and we are so blessed with each day that we have with each other.
Please continue to keep Kaitlyn in your prayers but also all of the other families who are fighting this disease, whether they just got a diagnosis that their child's life will be cut short, or those who are starting to notice their child not being able to do the things they once were able to do or those who are fighting to keep their child alive. One day there will be a cure for this heartbreaking disease, but for now we must persevere and lift each other up in prayer and compassion.
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| A hint of a smile |
A few weeks ago, I posted a video about the beginning of our journey with Niemann-Pick Disease. I had no idea how many people would see this video and be affected by it. The first week I had the video link on Facebook, I had over 50 Facebook Friends share the link with all of their friends. I don't know how many of those friends then went on to share it but I started to receive donations on Paypal and in the mail for the 11/11/11 Challenge. So far, they have been mostly from people we don't even know... but YOU do.
Just by doing something as simple as sharing Kaitlyn's video, we have already received over $1,200 that will go directly to research for Type A/B. This doesn't include any donations that were made directly to the Niemann-Pick Foundation in honor of Kailtyn. This wouldn't have happened without your help. Please continue to share Kaitlyn's video with others, whether it's through Facebook or email or showing them the video on your phone or laptop. It is making a big difference. With over 800 views on YouTube, that is A LOT of people who now know a little more about Niemann-Pick disease who otherwise wouldn't have a clue. The value of awareness is priceless. I have had messages from people saying that it has touched their hearts in a profound way and even some who said they were sobbing at work (sorry!). Just knowing that it has made an impact on their lives in some way, whether it be for an hour or a week or forever, makes me so proud to be Kaitlyn's mother.
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| Always my favorite thing to do... hold her |
As for Kaitlyn, she is doing well. Every day is different in how she is feeling. Almost every day she has multiple seizure-like episodes or episodes where she stops breathing. They don't last very long, a minute at the most, and we have been increasing certain medications, which seems to be helping. Today she didn't have an episode at all! It's been awhile since I could say that. Although tomorrow we could wake up and it be a completely different story! That's okay though, cause we still have her here and we are so blessed with each day that we have with each other.
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| Smiles for Pepere! |
Please continue to keep Kaitlyn in your prayers but also all of the other families who are fighting this disease, whether they just got a diagnosis that their child's life will be cut short, or those who are starting to notice their child not being able to do the things they once were able to do or those who are fighting to keep their child alive. One day there will be a cure for this heartbreaking disease, but for now we must persevere and lift each other up in prayer and compassion.
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| Always on the go but he stops to check on her... |
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| to say hi... |
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| and give her a kiss! |
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