- My eldest daughter Julie, just received the terrible news that not only her husband Sean, but, all three of their children, Zoey 27, Myles 23 & Lucy 17, have recently tested positive for Loey-Dietz Syndrome. Which is a rare hereditary, genetic disease. They are currently awaiting test results for Eleanor, their only grandchild as well.
This diagnosis has brought a wave of uncertainty and worry to their family, as they now face a series of medical tests and ongoing treatments to monitor and manage the disease. Some appointments have already been scheduled, including echocardiograms, MRIs of the vascular system, x-rays, and CT scans. The process is simply overwhelming for my daughter, who is doing her best to hold it together emotionally, through this extremely, challenging time.
Her youngest, Lucy, has suffered for years from different symptoms, including scoliosis and pectus excavatum (her chest cavity is literally caving in, causing pressure on her heart.) After years of doctor visits, tests, and body braces, she was finally referred to a specialist at Children’s in Cincinnati, where they pinpointed that everything she has suffered through relates to this disease.
The urgency to test her dad and her siblings was brought on after Lucy’s diagnosis.
With the rising cost of everyday living being stressful enough, now, the financial burden of these new medical bills and travel expenses has been a significant strain. The specialists they will all need to see are located in Cincinnati, which means frequent trips back and forth from Versailles, Ky. Adding to the stress and costs. Every dollar raised will help cover these expenses, making it possible for the family to focus on their health and well-being instead of worrying about how to pay for care.
Any and all donations will be helpful and will relieve a lot of the stress of this financial burden that has been placed upon their family. Your support means so much during this difficult time, and we are deeply grateful for any help you can provide.
As a mother and grandmother, this news has been devastating. My heart aches knowing the heaviness this has put on my daughter and her family. I know there is nothing I can do to fix this, but, what I can do is ask for help.
If you are unable to give, I totally understand but would you please, lift up my daughter Julie and her entire family in prayer!
- From the bottom of my heart, thank you!
To learn more about Loey-Dietz Syndrome, https://marfan.org/wp-content/uploads/2021/01/Loey-Dietz_Syndrome.pdf