$17,350 raised
·279 donations
Ustruck family battles Battens
Donation protected
This is the Ustruck family. Bill and Missy have been married for 11 years and they were blessed with five children. Their oldest, Owen is 9. Twin boys, Sully and Quinn, 7 (sully deceased Dec 2013) and Colton, age 6. In September 2010 the Ustrucks got the incredible news that they were pregnant and in May of 2011, they welcomed a girl, Piper now age 3.
All four boys were active, reaching their developmental milestones and Bill and Missy worked full time, Bill as a sales rep for US foods and Missy a teacher. That all began to change in December of 2010. Sully, age 3 at the time had a seizure that came out of no where. 911 was called and it was determined that Sully had a febrile seizure, unfortunately that ended up not to be the case. He was diagnosed with epilepsy in January 2011 after a seizure that lasted 9 minutes and tests were run.
For almost a year the Ustruck's struggled with getting Sully's seizures under control-numerous hospital stays, med changes, sleepless nights worrying about what was happening to Sully. Missy no longer could work full time, Sully needed constant care. It was decided that brain resectioning may be the best option for Sully and his best chance to be somewhat seizure free. As all this was occuring, Sully was slowly regressing in all areas of life, less talking, trouble walking, behavior issues and sleep problems. Sully went through 4 brain surgeries, one due to a mid-line shift in his brain after the initial brain surgery.
Things were not improving as we all had hoped, but it was determined that Sully would be going home after 78 days straight, he would go home doing much less than he had before being admitted and the road to recovery would be a long one.
The day before Sully was to be discharged, the family got devastating news. There youngest son, Colton had a seizure in the car and was taken via ambulance to another hospital. Now the family had not one, but two children with seizure disorders and their world was crumbling down! As Sully slowly continued to regress, no matter what the family did. Colty began a constant struggle with seizures, med changes and numerous hospital stays. It was truly like daja vu!!
Bill and Missy wanted answers and all the tests that Childrens hospital could run were done, nothing was showing up. They decided to take Colton to Cleveland Clinic to get a second opinion. Nothing helped and no one had answers.
The family was finally able to do DNA in January 2012. 9 long months of waiting came to an end on October 2, 2012. Genetics sat down with Bill and Missy and told them they finally had an answer. The boys had Battens disease. They have late infantile or NCLs type 2. Onset begins between the age of 2-4 in an otherwise healthy child. There is no cure or treatment. Life expectancy is 6-10 years.
A short two months after the family got the diagnosis, Sully took his last breaths at Childrens hospital in his parents arms on December 9, 2013. The past year has been anything but easy on the family. So much medical debt, constant care of Colty, who can no longer do anything for himself and grieving the lose of their "Sully Bear".
Currently Colton is in the ICU at Childrens. He has developed pneumonia. Pneumonia is what took Sully's life and the family is doing all they can to bring Colty home.
Over the past few years, the family has had a spaghetti dinner fundraiser in August that has helped them raise money to try and eleviate some debt, help with equipment for Coltys care and they hope to modify there home to make things easier to care for Colty. This year the family has decided to take a break from the spaghetti benefit. If you would like to contribute to the family and help them financially, please donate.
If you are fortunate to know this family you know they appreciate all the love and support. They have 3 healthy, wonderful children that have been through so much and will continue to struggle with the lose of not one but in the future, two brothers. Sully and Colty have taught us all what truly matters in this life, Make every Moment count and HOPE matters!!!
All four boys were active, reaching their developmental milestones and Bill and Missy worked full time, Bill as a sales rep for US foods and Missy a teacher. That all began to change in December of 2010. Sully, age 3 at the time had a seizure that came out of no where. 911 was called and it was determined that Sully had a febrile seizure, unfortunately that ended up not to be the case. He was diagnosed with epilepsy in January 2011 after a seizure that lasted 9 minutes and tests were run.
For almost a year the Ustruck's struggled with getting Sully's seizures under control-numerous hospital stays, med changes, sleepless nights worrying about what was happening to Sully. Missy no longer could work full time, Sully needed constant care. It was decided that brain resectioning may be the best option for Sully and his best chance to be somewhat seizure free. As all this was occuring, Sully was slowly regressing in all areas of life, less talking, trouble walking, behavior issues and sleep problems. Sully went through 4 brain surgeries, one due to a mid-line shift in his brain after the initial brain surgery.
Things were not improving as we all had hoped, but it was determined that Sully would be going home after 78 days straight, he would go home doing much less than he had before being admitted and the road to recovery would be a long one.
The day before Sully was to be discharged, the family got devastating news. There youngest son, Colton had a seizure in the car and was taken via ambulance to another hospital. Now the family had not one, but two children with seizure disorders and their world was crumbling down! As Sully slowly continued to regress, no matter what the family did. Colty began a constant struggle with seizures, med changes and numerous hospital stays. It was truly like daja vu!!
Bill and Missy wanted answers and all the tests that Childrens hospital could run were done, nothing was showing up. They decided to take Colton to Cleveland Clinic to get a second opinion. Nothing helped and no one had answers.
The family was finally able to do DNA in January 2012. 9 long months of waiting came to an end on October 2, 2012. Genetics sat down with Bill and Missy and told them they finally had an answer. The boys had Battens disease. They have late infantile or NCLs type 2. Onset begins between the age of 2-4 in an otherwise healthy child. There is no cure or treatment. Life expectancy is 6-10 years.
A short two months after the family got the diagnosis, Sully took his last breaths at Childrens hospital in his parents arms on December 9, 2013. The past year has been anything but easy on the family. So much medical debt, constant care of Colty, who can no longer do anything for himself and grieving the lose of their "Sully Bear".
Currently Colton is in the ICU at Childrens. He has developed pneumonia. Pneumonia is what took Sully's life and the family is doing all they can to bring Colty home.
Over the past few years, the family has had a spaghetti dinner fundraiser in August that has helped them raise money to try and eleviate some debt, help with equipment for Coltys care and they hope to modify there home to make things easier to care for Colty. This year the family has decided to take a break from the spaghetti benefit. If you would like to contribute to the family and help them financially, please donate.
If you are fortunate to know this family you know they appreciate all the love and support. They have 3 healthy, wonderful children that have been through so much and will continue to struggle with the lose of not one but in the future, two brothers. Sully and Colty have taught us all what truly matters in this life, Make every Moment count and HOPE matters!!!
Donations
Organizer
Monica Murphy Hackett
Organizer
Milwaukee, WI