Monday, February 19, 2007
MDA Stride & Ride 2007
Please help me in supporting the Muscular Dystrophy Association…
My name is David Loveland and I am a Registered Nurse for Henry Ford Hospital in Detroit, Michigan. My wife LeeAnn and I were very fortunate to become parents December 06, 2005. It was a day that changed our lives in more ways than one. While we are very lucky to have been blessed with a beautiful baby girl (Liliana Sue Loveland), we were very surprised to find out that she has a rare neuromuscular condition called Nemaline Myopathy. Some of our doctors told us that she would not live to see a year. She was born with severe hypotonia meaning that she had very little muscle tone. While she could make small movements in the amniotic fluid, in the real world she could not move an inch. Eventually this would lead her into respiratory distress as her respiratory muscles tired out. From the day she was born, she spent 100 days in the NICU. She went through a lot in her 100 day stay including, bipap, intubation, tracheostomy, EMG, muscle biopsy, PEG tube placement, and required CPR on one occasion. This was a hard time for our family. We made it through those tough 100 days and were very happy to finally take Liliana home. While it is nice to be home, each day is still an uphill battle. Liliana is approved for private duty nursing (16-hours per day) which is tough to get filled consistently. She remains trached and on a ventilator requiring constant monitoring, she undergoes extensive physical therapy by both ourselves and certified therapists, she has multiple different doctors which we have to take her to see regularly with her many medical devices and pieces of equipment, and she still has and will always have some amount of hypotonia. Despite all of this, she continues to amaze us with each and every day. She is a fighter and we have set her limits high because she has shown us that she can handle anything that we throw at her. Also, we have had a tremendous amount of support from both our families and friends. Insurance has been a chore in itself to deal with to make sure that everything gets covered, but for the most part coverage has been awesome between our three insurances. What I am trying to say is that our family has been very blessed.
There are countless families out there who have not been as fortunate as we are. I read stories every day about other families going through the same thing but they do not have the resources and support that we do. Whether there is lack of family support, abandonment by a spouse, lack of insurance coverage, lack of adequate income to meet needs, these families need lots of help. For most of them, the only way that they can get that help is through the Muscular Dystrophy Association.
Since Liliana was born and we found out that she has a neuromuscular condition, we have put a lot of our time and energy into participating in and raising money for the Muscular Dystrophy Association's Stride and Ride event. This is a charity event held annually and is put on by a local branch of the MDA. It is typically held at a large location such as a mall before opening hours. People affected by a neuromuscular disease, their families, and friends all get together with the donations that they have collected. As a group we stride (walk), and ride (in a wheelchair for those affected by a neuromuscular disease) in laps around the mall.
This year the MDA Stride and Ride will be held on March 11, 2007 at the Oakland Mall. The money that is collected goes toward MDA clinics, support groups, summer camp, medical equipment, health education, and research to defeat some 43 neuromuscular diseases that affect people of all ages right here in our community. Last year our team of friends and family "Liliana's Angels", who walked in honor of Liliana Sue Loveland, raised the most out of any other group. My wife and I received an award and had a few minutes of air time on the local MDA telethon for "Jerry's Kids". It makes us feel so good to know how many people we have helped and to know that the money raised could eventually lead to a research breakthrough that could help our own precious Liliana.
It is my hope that our story has moved you and you can find it in your heart to donate to a great cause. We would love to be the top donating team again this year, but we can't do it without your help.
To donate to the MDA Stride and Ride 2007 please visit:
MDA Stride & Ride 2007
My name is David Loveland and I am a Registered Nurse for Henry Ford Hospital in Detroit, Michigan. My wife LeeAnn and I were very fortunate to become parents December 06, 2005. It was a day that changed our lives in more ways than one. While we are very lucky to have been blessed with a beautiful baby girl (Liliana Sue Loveland), we were very surprised to find out that she has a rare neuromuscular condition called Nemaline Myopathy. Some of our doctors told us that she would not live to see a year. She was born with severe hypotonia meaning that she had very little muscle tone. While she could make small movements in the amniotic fluid, in the real world she could not move an inch. Eventually this would lead her into respiratory distress as her respiratory muscles tired out. From the day she was born, she spent 100 days in the NICU. She went through a lot in her 100 day stay including, bipap, intubation, tracheostomy, EMG, muscle biopsy, PEG tube placement, and required CPR on one occasion. This was a hard time for our family. We made it through those tough 100 days and were very happy to finally take Liliana home. While it is nice to be home, each day is still an uphill battle. Liliana is approved for private duty nursing (16-hours per day) which is tough to get filled consistently. She remains trached and on a ventilator requiring constant monitoring, she undergoes extensive physical therapy by both ourselves and certified therapists, she has multiple different doctors which we have to take her to see regularly with her many medical devices and pieces of equipment, and she still has and will always have some amount of hypotonia. Despite all of this, she continues to amaze us with each and every day. She is a fighter and we have set her limits high because she has shown us that she can handle anything that we throw at her. Also, we have had a tremendous amount of support from both our families and friends. Insurance has been a chore in itself to deal with to make sure that everything gets covered, but for the most part coverage has been awesome between our three insurances. What I am trying to say is that our family has been very blessed.
There are countless families out there who have not been as fortunate as we are. I read stories every day about other families going through the same thing but they do not have the resources and support that we do. Whether there is lack of family support, abandonment by a spouse, lack of insurance coverage, lack of adequate income to meet needs, these families need lots of help. For most of them, the only way that they can get that help is through the Muscular Dystrophy Association.
Since Liliana was born and we found out that she has a neuromuscular condition, we have put a lot of our time and energy into participating in and raising money for the Muscular Dystrophy Association's Stride and Ride event. This is a charity event held annually and is put on by a local branch of the MDA. It is typically held at a large location such as a mall before opening hours. People affected by a neuromuscular disease, their families, and friends all get together with the donations that they have collected. As a group we stride (walk), and ride (in a wheelchair for those affected by a neuromuscular disease) in laps around the mall.
This year the MDA Stride and Ride will be held on March 11, 2007 at the Oakland Mall. The money that is collected goes toward MDA clinics, support groups, summer camp, medical equipment, health education, and research to defeat some 43 neuromuscular diseases that affect people of all ages right here in our community. Last year our team of friends and family "Liliana's Angels", who walked in honor of Liliana Sue Loveland, raised the most out of any other group. My wife and I received an award and had a few minutes of air time on the local MDA telethon for "Jerry's Kids". It makes us feel so good to know how many people we have helped and to know that the money raised could eventually lead to a research breakthrough that could help our own precious Liliana.
It is my hope that our story has moved you and you can find it in your heart to donate to a great cause. We would love to be the top donating team again this year, but we can't do it without your help.
To donate to the MDA Stride and Ride 2007 please visit:
MDA Stride & Ride 2007
# posted by davidrobertloveland @ 3:38:00 AM 
