Juliet's - Then, Now and When
Donation protected
Juliet is our 9 month old baby girl, she has spent nearly half of her life in hospitals. In December she officially received her diagnosis of Vici Syndrome (only 22 reported cases in the world).
Vici Syndrome (VS) is an extremely rare multi-system disorder characterized by an absence of corpus callosum (part of the brain), low muscle tone, significant developmental delays, cataracts, heart muscle disease, abnormalities of the immune system, seizures,recurrent severe infections and in some cases loss of hearing. Life expectancy for children with VS varies between ages three through eight.
Our typical routine seems to be, a couple weeks in the hospital, then a couple weeks a home before she gets admitted again. Our longest stay has been 28 days. With Ten hospital stays to her name.
This last christmas she did manage to stay out of the hospital for nearly 6 weeks! Home! It was the perfect gift! For the whole family.
We live in a rural location just over 4 hours from Childrens Hospital in Omaha, NE, which is the closest facility that has the capibilites, fabulous Doctors, wonderful nurses, and great respiratory therapists to handle her medical needs.
Juliet has two older siblings, Piper 6 and Parker 3, so time management and remaining a family unit while being at the hospital, home, and work has been tricky to figure out. Medical and Travel expenses, as you can imagine, have pile up quickly.
All money generously given, will help to pay off medical debt . Any extra funds will go in a special account for projected future expenses or used to give gifts to other families we meet along our journey, who may have an immediate need we could help with. (Ex: gas card, food gift card, encouragement gift...)
Thank you for your support!
Above all we thank you for showing us support though your prayers, calls, encouragement.
To God Be the Glory
-Justin and Jailyn
Piper and Parker and Juliet
www.rarejul.com
Vici Syndrome (VS) is an extremely rare multi-system disorder characterized by an absence of corpus callosum (part of the brain), low muscle tone, significant developmental delays, cataracts, heart muscle disease, abnormalities of the immune system, seizures,recurrent severe infections and in some cases loss of hearing. Life expectancy for children with VS varies between ages three through eight.
Our typical routine seems to be, a couple weeks in the hospital, then a couple weeks a home before she gets admitted again. Our longest stay has been 28 days. With Ten hospital stays to her name.
This last christmas she did manage to stay out of the hospital for nearly 6 weeks! Home! It was the perfect gift! For the whole family.
We live in a rural location just over 4 hours from Childrens Hospital in Omaha, NE, which is the closest facility that has the capibilites, fabulous Doctors, wonderful nurses, and great respiratory therapists to handle her medical needs.
Juliet has two older siblings, Piper 6 and Parker 3, so time management and remaining a family unit while being at the hospital, home, and work has been tricky to figure out. Medical and Travel expenses, as you can imagine, have pile up quickly.
All money generously given, will help to pay off medical debt . Any extra funds will go in a special account for projected future expenses or used to give gifts to other families we meet along our journey, who may have an immediate need we could help with. (Ex: gas card, food gift card, encouragement gift...)
Thank you for your support!
Above all we thank you for showing us support though your prayers, calls, encouragement.
To God Be the Glory
-Justin and Jailyn
Piper and Parker and Juliet
www.rarejul.com
Organizer
Jailyn B Strasburg
Organizer
Callaway, NE
