Jeg's Fight Against NPC
Donation protected
Galatians 6:2 says "Carry one another's burdens and in this way you will fulfill the requirements of the law of Christ-the law of Christian love."
Lets help the Weets family by carrying part of their burden. I know so many want to help and they are extremely blessed by the generosity already. Brad and Jenna have not asked for help, but there have been a group of us that have stepped in and told them that we want to help in this way. They are humbled already by the outpouring of love and support from friends and family and even strangers! We also have an account set up at Triumph Bank in Morrison. If you live in town, you can stop in there to make your donation, and 100% of that money will go to Brad and Jenna. Just make your check out to Brad or Jenna, and deposit into "Jegs Fight Against NPC". Thank you for your love and support to their family. Lets all rally around them and fight this right along side of them.
Here is Brad and Jenna's story:
"On October 6, 2017 on a family vacation, we were living our normal lives, blissfully unaware of the fragility of life when it all came to a screeching halt with a voicemail. We were left a voicemail telling us that our son, Jeg, had screened positive for a rare and fatal genetic disease and storage disorder called Niemann Pick Type C (NPC) (also referred to as “Childhood Alzheimer’s”). He is only 4 years old. On December 15, 2017, we received the devastating news of a confirmed diagnosis through the DNA testing. Our lives are shattered, and our worst
fears have become our reality. There is also a 25% chance that our daughter, Claire, who is 7 years old could also have this disease. We are currently waiting on her results. We are now reaching out for your help and support to save our son. Without treatment and a cure, the average life expectancy is 13 years old.
Our Family
Jeg is 4 years old and is the sweetest, kindest little boy. He always thinks of others before himself. He loves anything with a motor and wheels especially race cars, dirt bikes, and monster trucks. He loves going to school and helping anyone in any way he can. He can't wait to play t-ball again, start bowling like his big sister when he is 5, and driving his junior dragster. As a baby he reached all his milestones on time. In November of 2017, in addition to the suspected NPC, he was diagnosed with Chron’s Disease. He receives a shot at home every two weeks for treatment. This seems to be under control right now. Jeg has an enlarged spleen that was discovered when he was 3 years old. He also has some delays in his responsive thoughts for his age, clumsiness in jumping and running and he is showing a possible eye movement issue due to his NPC. Big sister Claire is never far without her little brother by her side. She has been nothing but understanding and supportive during all of Jeg’s medical issues.
Diagnosis & NPC
When Jeg was 2 years old he started getting rectal skin tags. We took him to Iowa City Children’s Hospital for a colonoscopy, upper and lower scope and biopsies. They found that there was no inflammation present and they could not diagnose him with Chron’s yet. About six months later they noticed that he had an enlarged spleen through an ultrasound. In September of 2017, Jeg underwent a skin biopsy of his rectum because he had skin fissures (deep ulcers) that would not go away. For about a year he suffered with the pain on his bottom. When Iowa City received his biopsy results it indicated he indeed had Chron’s and that he had a possible storage disorder. We were seen by a genetic specialist and on October 6, 2017 while on a trip to Disney World, we were left a voicemail telling us our son had screened positive for Niemman Pick Type C. Not knowing what this was, we googled it and were instantly horrified by what we found. It caught us completely off guard as our son looks so healthy and normal. We were due to board a plane several hours later to come home from Disney and we struggled to keep it together and get the kids home as they were wondering why we were such an emotional mess. Next, the process of DNA testing then had to happen and that took 2 months. On December 15, 2017 it was confirmed that Jeg indeed has NPC. NPC is a very rare genetic disease that slowly steals a healthy child or adult’s health. The early signs of the disease are an enlarged spleen or liver. The onset of the neurological symptoms usually start to present around age 6 but that is not always the case. Symptoms such as
slurred speech, loss of balance, loss of the ability to swallow, forgetfulness, and learning difficulties until it takes away the children’s ability to walk, talk, and eat resulting in wheelchairs and feeding tubes. It also causes hearing loss and seizures. NPC is nicknamed “Childhood Alzheimer’s” because it will also give them dementia. Sadly, it is fatal and causes death. The
average life span is 13 years old. There is no FDA approved treatment or cure. But there is hope for Jeg. If you would like to learn more about NPC please visit: http://fightnpc.com/en
Hope to save Jeg and what you can do to help
We have found hope despite this terrible diagnosis and a way to stall this disease and keep Jeg healthy long enough for there to be a cure found. VTS-270 is a clinical trial drug and it has been shown to slow or stop the progression of this disease. The drug VTS-270 is in phase 3 of clinical trials and through a compassionate use program, (This involves an application process that will need approval before they start the treatment). Jeg will be receiving this drug via spinal tap under sedation every two weeks, for the rest of his life unless they come up with a cure! He will first receive the drug at Rush University Hospital in Chicago until we can transfer it closer to home. We visited with Dr. Kravis and her team at Rush Hospital January 10-12th and Jeg was tested in several different areas. His liver was checked which came back good, blood work was done, a swallow study, gait analysis, cognitive testing, as well as his speech. He is having a delay with his responsiveness to answering questions. They are hopeful that after treatment begins he will catch back up. They noticed that his running gait is awkward and he can not jump as much as a normal child his age. He also is presenting with a eye issue when he goes to follow something upwards that is common with NPC patients. What the doctors have told us that finding this early was the best case scenario. We have found it before it could do alot of neurological damage. They say the patients that have minimal symptoms and pursue treatment with the VTS-270 respond the best. There were a few tests he was not able to complete at Rush so he will be completing these next week when we go to the National Health Institute in Maryland. We will be making visits to Maryland every six months along with our every other week visits to Rush. Our first visit to Maryland will be Jan 21-Jan 26. Jeg will take part in a study where he will be undergoing more tests which include a MRI,audiology and eye movement tests among others. We are hoping that any information that they gain will help him and other patients past and present.
The financial and emotional toll this will take on our family will be large.That is why we are asking for your help. This money will be going to help cover medical
expenses, travel costs to Chicago as well as Maryland and missed wages. Our goal is to keep giving our children a normal life,filled with love and lots of memories. Like all parents we have an idea of the things we want to experience with our children through their lifetime. You never think you will run out of time to do those things. We have started a bucket list of things we want to do as a family with
Jeg. They range from small things like flying a kite, going fishing, ice skating, roller skating, going to his first concert to visiting Star Wars Land when it opens at Disney World. We do not know when this disease will take hold of our son, we hope with treatment it will be a long time but we don't want to take another moment for granted. When we think of living life without him someday we can't picture that future for us. He completes this family and makes us all whole.
Anyone who meets him and spends time with him tells us what a special boy he is and how sweet he is. Brad and I have both said for years that he is a special little boy. That there was something about him. We believe he was put here for a greater purpose. We aren't sure what that is yet but God put him in our lives for something much bigger than ourselves. Jeremiah 1:5 says "Before I formed you in the womb i knew you. And before you were born I consecrated you; I have appointed you a prophet to the nations." This verse reminds us that Jeggie was made perfectly in the image of God and regardless of the outfcome of this disease, he was put on this earth ON purpose and FOR a purpose.
Another goal of ours is to make a donation to one of the many labs that are trying so hard to find a cure for this disease. With it being such a rare disease the funding for the labs is primarily funded by private donations. The more money the labs have, the more research they can do. Our hope lies with the labs and the chance they can find a cure while we buy Jeg time with VTS-270.
Unfortunately we don't have a crystal ball to know how long the treatment will work, if it will work as much as we need it too, and what other medical issues he may develop. We are very hopeful and will fight this disease together as a family, with everything we have. We will not go down without trying to give our son the best shot at living a healthy life. We thank you for supporting us big or small through the biggest fight of our lives. We can't do any of this without your help."
May the Force be with us.
Lets help the Weets family by carrying part of their burden. I know so many want to help and they are extremely blessed by the generosity already. Brad and Jenna have not asked for help, but there have been a group of us that have stepped in and told them that we want to help in this way. They are humbled already by the outpouring of love and support from friends and family and even strangers! We also have an account set up at Triumph Bank in Morrison. If you live in town, you can stop in there to make your donation, and 100% of that money will go to Brad and Jenna. Just make your check out to Brad or Jenna, and deposit into "Jegs Fight Against NPC". Thank you for your love and support to their family. Lets all rally around them and fight this right along side of them.
Here is Brad and Jenna's story:
"On October 6, 2017 on a family vacation, we were living our normal lives, blissfully unaware of the fragility of life when it all came to a screeching halt with a voicemail. We were left a voicemail telling us that our son, Jeg, had screened positive for a rare and fatal genetic disease and storage disorder called Niemann Pick Type C (NPC) (also referred to as “Childhood Alzheimer’s”). He is only 4 years old. On December 15, 2017, we received the devastating news of a confirmed diagnosis through the DNA testing. Our lives are shattered, and our worst
fears have become our reality. There is also a 25% chance that our daughter, Claire, who is 7 years old could also have this disease. We are currently waiting on her results. We are now reaching out for your help and support to save our son. Without treatment and a cure, the average life expectancy is 13 years old.
Our Family
Jeg is 4 years old and is the sweetest, kindest little boy. He always thinks of others before himself. He loves anything with a motor and wheels especially race cars, dirt bikes, and monster trucks. He loves going to school and helping anyone in any way he can. He can't wait to play t-ball again, start bowling like his big sister when he is 5, and driving his junior dragster. As a baby he reached all his milestones on time. In November of 2017, in addition to the suspected NPC, he was diagnosed with Chron’s Disease. He receives a shot at home every two weeks for treatment. This seems to be under control right now. Jeg has an enlarged spleen that was discovered when he was 3 years old. He also has some delays in his responsive thoughts for his age, clumsiness in jumping and running and he is showing a possible eye movement issue due to his NPC. Big sister Claire is never far without her little brother by her side. She has been nothing but understanding and supportive during all of Jeg’s medical issues.
Diagnosis & NPC
When Jeg was 2 years old he started getting rectal skin tags. We took him to Iowa City Children’s Hospital for a colonoscopy, upper and lower scope and biopsies. They found that there was no inflammation present and they could not diagnose him with Chron’s yet. About six months later they noticed that he had an enlarged spleen through an ultrasound. In September of 2017, Jeg underwent a skin biopsy of his rectum because he had skin fissures (deep ulcers) that would not go away. For about a year he suffered with the pain on his bottom. When Iowa City received his biopsy results it indicated he indeed had Chron’s and that he had a possible storage disorder. We were seen by a genetic specialist and on October 6, 2017 while on a trip to Disney World, we were left a voicemail telling us our son had screened positive for Niemman Pick Type C. Not knowing what this was, we googled it and were instantly horrified by what we found. It caught us completely off guard as our son looks so healthy and normal. We were due to board a plane several hours later to come home from Disney and we struggled to keep it together and get the kids home as they were wondering why we were such an emotional mess. Next, the process of DNA testing then had to happen and that took 2 months. On December 15, 2017 it was confirmed that Jeg indeed has NPC. NPC is a very rare genetic disease that slowly steals a healthy child or adult’s health. The early signs of the disease are an enlarged spleen or liver. The onset of the neurological symptoms usually start to present around age 6 but that is not always the case. Symptoms such as
slurred speech, loss of balance, loss of the ability to swallow, forgetfulness, and learning difficulties until it takes away the children’s ability to walk, talk, and eat resulting in wheelchairs and feeding tubes. It also causes hearing loss and seizures. NPC is nicknamed “Childhood Alzheimer’s” because it will also give them dementia. Sadly, it is fatal and causes death. The
average life span is 13 years old. There is no FDA approved treatment or cure. But there is hope for Jeg. If you would like to learn more about NPC please visit: http://fightnpc.com/en
Hope to save Jeg and what you can do to help
We have found hope despite this terrible diagnosis and a way to stall this disease and keep Jeg healthy long enough for there to be a cure found. VTS-270 is a clinical trial drug and it has been shown to slow or stop the progression of this disease. The drug VTS-270 is in phase 3 of clinical trials and through a compassionate use program, (This involves an application process that will need approval before they start the treatment). Jeg will be receiving this drug via spinal tap under sedation every two weeks, for the rest of his life unless they come up with a cure! He will first receive the drug at Rush University Hospital in Chicago until we can transfer it closer to home. We visited with Dr. Kravis and her team at Rush Hospital January 10-12th and Jeg was tested in several different areas. His liver was checked which came back good, blood work was done, a swallow study, gait analysis, cognitive testing, as well as his speech. He is having a delay with his responsiveness to answering questions. They are hopeful that after treatment begins he will catch back up. They noticed that his running gait is awkward and he can not jump as much as a normal child his age. He also is presenting with a eye issue when he goes to follow something upwards that is common with NPC patients. What the doctors have told us that finding this early was the best case scenario. We have found it before it could do alot of neurological damage. They say the patients that have minimal symptoms and pursue treatment with the VTS-270 respond the best. There were a few tests he was not able to complete at Rush so he will be completing these next week when we go to the National Health Institute in Maryland. We will be making visits to Maryland every six months along with our every other week visits to Rush. Our first visit to Maryland will be Jan 21-Jan 26. Jeg will take part in a study where he will be undergoing more tests which include a MRI,audiology and eye movement tests among others. We are hoping that any information that they gain will help him and other patients past and present.
The financial and emotional toll this will take on our family will be large.That is why we are asking for your help. This money will be going to help cover medical
expenses, travel costs to Chicago as well as Maryland and missed wages. Our goal is to keep giving our children a normal life,filled with love and lots of memories. Like all parents we have an idea of the things we want to experience with our children through their lifetime. You never think you will run out of time to do those things. We have started a bucket list of things we want to do as a family with
Jeg. They range from small things like flying a kite, going fishing, ice skating, roller skating, going to his first concert to visiting Star Wars Land when it opens at Disney World. We do not know when this disease will take hold of our son, we hope with treatment it will be a long time but we don't want to take another moment for granted. When we think of living life without him someday we can't picture that future for us. He completes this family and makes us all whole.
Anyone who meets him and spends time with him tells us what a special boy he is and how sweet he is. Brad and I have both said for years that he is a special little boy. That there was something about him. We believe he was put here for a greater purpose. We aren't sure what that is yet but God put him in our lives for something much bigger than ourselves. Jeremiah 1:5 says "Before I formed you in the womb i knew you. And before you were born I consecrated you; I have appointed you a prophet to the nations." This verse reminds us that Jeggie was made perfectly in the image of God and regardless of the outfcome of this disease, he was put on this earth ON purpose and FOR a purpose.
Another goal of ours is to make a donation to one of the many labs that are trying so hard to find a cure for this disease. With it being such a rare disease the funding for the labs is primarily funded by private donations. The more money the labs have, the more research they can do. Our hope lies with the labs and the chance they can find a cure while we buy Jeg time with VTS-270.
Unfortunately we don't have a crystal ball to know how long the treatment will work, if it will work as much as we need it too, and what other medical issues he may develop. We are very hopeful and will fight this disease together as a family, with everything we have. We will not go down without trying to give our son the best shot at living a healthy life. We thank you for supporting us big or small through the biggest fight of our lives. We can't do any of this without your help."
May the Force be with us.
Organizer and beneficiary
Katie Tucker
Organizer
Morrison, IL
Jenna Weets
Beneficiary
