Loving Lacy
May 2, 2009 was our very first Great Strides walk. Lacy had just been released from the NICU on April 23 after 4 weeks. And approximately 3 weeks after DNA tests confirmed, at the time, our biggest fear...Cystic Fibrosis. My sister started a Caring Bridge page to keep all of our friends and family updated. I recently found a copy of those updates (no, I'm not a hoarder...I knew I would need it one day and here we are!). One post, in particular, stood out to me as I was rereading them today.
On April 13, 2009 (which was the day after Easter) my sister wrote:
"Easter is a time of renewal, forgiveness, and new beginnings. It is a time to give thanks for all the many blessings God has bestowed on us and to focus on His promise of HOPE for a better day. These last three weeks have been heartbreaking for all of us. We have cried. We have yelled. We have questioned. We have worried...And yet, through it all, one feeling has always been there: HOPE."
HOPE is an optimistic state of mind that is based on an expectation of positive outcomes in one's life. Hope is the power to believe that anything is possible...a fresh start, a second chance, or to WISH UPON A MIRACLE.
The definition of HOPE feels different to me today than it did 16 years ago. 16 years ago I had to make myself feel optimistic and hopeful about Lacy's future, but deep down I was not so sure. Today, HOPE is not just wishful thinking but a deep, unwavering belief in a positive future!
Lacy has been taking Trikafta for 4 years. She no longer has to do breathing treatments and has not had to increase her enzyme dose in years. We only see Dr. Sindel twice a year and at her last appointment in January, she had one of the best reports she has ever had. Her lung function is beyond excellent. She has maintained a healthy weight and her liver enzymes (which had been elevated) were back in the normal range. Which means, Trikafta, has lived up to its hype! But, alas, it is NOT A CURE.
Since 2020, the CF Foundation has funded more than $1 billion in research. $238 million of that was for genetic therapy research that may benefit all people with CF, regardless of their mutations. Genetic therapies are our best chance for finding a cure for CF. The research for these therapies are more complex and will require a substantial investment.
While CF is not at the forefront of our minds, the fact that Lacy is not "cured", is. Since 2009, Team Loving Lacy (which includes ALL OF YOU!) has raised a total of $336,006 for CF research and care. Why stop there? And as "they" say, money buys science and science buys life! Please help us make CF stand for CURE FOREVER!
With much love and HOPE,
Ashley & Brad
On April 13, 2009 (which was the day after Easter) my sister wrote:
"Easter is a time of renewal, forgiveness, and new beginnings. It is a time to give thanks for all the many blessings God has bestowed on us and to focus on His promise of HOPE for a better day. These last three weeks have been heartbreaking for all of us. We have cried. We have yelled. We have questioned. We have worried...And yet, through it all, one feeling has always been there: HOPE."
HOPE is an optimistic state of mind that is based on an expectation of positive outcomes in one's life. Hope is the power to believe that anything is possible...a fresh start, a second chance, or to WISH UPON A MIRACLE.
The definition of HOPE feels different to me today than it did 16 years ago. 16 years ago I had to make myself feel optimistic and hopeful about Lacy's future, but deep down I was not so sure. Today, HOPE is not just wishful thinking but a deep, unwavering belief in a positive future!
Lacy has been taking Trikafta for 4 years. She no longer has to do breathing treatments and has not had to increase her enzyme dose in years. We only see Dr. Sindel twice a year and at her last appointment in January, she had one of the best reports she has ever had. Her lung function is beyond excellent. She has maintained a healthy weight and her liver enzymes (which had been elevated) were back in the normal range. Which means, Trikafta, has lived up to its hype! But, alas, it is NOT A CURE.
Since 2020, the CF Foundation has funded more than $1 billion in research. $238 million of that was for genetic therapy research that may benefit all people with CF, regardless of their mutations. Genetic therapies are our best chance for finding a cure for CF. The research for these therapies are more complex and will require a substantial investment.
While CF is not at the forefront of our minds, the fact that Lacy is not "cured", is. Since 2009, Team Loving Lacy (which includes ALL OF YOU!) has raised a total of $336,006 for CF research and care. Why stop there? And as "they" say, money buys science and science buys life! Please help us make CF stand for CURE FOREVER!
With much love and HOPE,
Ashley & Brad
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