Joey's Journey~to Fight DIPG
Donation protected
On September 22nd, 2016, Joe & Carolynn's little boy Joey (who was 6 at the time) was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma). To read more about Joey's diagnosis, please click the link below:
https://www.defeatdipg.org/dipg-facts/overview/what-is-dipg/
Back in December, Joey had his first MRI after his 30-day radiation treatment was over. It showed significant shrinkage- 54% to be exact! We all celebrated when we heard the news! Three months went by and his tumor proved to be holding stable at a shrinkage of 54%! So, all was well until about 3 weeks ago. Joey began to show signs of a possible setback- not running as fast as he was, not hitting the baseball as hard as he used to. More recently, he hasn't been steady on his feet and has to do one stair at a time, he trips a lot and wobbles as he walks. On Tuesday 6/27, they learned that Joey's tumor is in a progressive state. It has grown 20% since his last MRI. This tumor is a demon that grows until the child cannot move, talk, see, swallow or chew anymore- until it ultimately steals their life.
Now, there are quick decisions that need to be made. Joe and Carolynn have to decide how to try to best help Joey. They have been praying, researching, planning, talking to experts all over the world, reaching out to everyone who has a connection to DIPG in hopes to make the best deicision possible for their son, Joey. Trials are the only answer they have. There are very few in the states as of right now and some out of the country. These trials are not government funded nor covered by insurance, so their family must pay out of pocket. There is no price on the life of their 7 year old boy. God willing, there is a miracle for Joey.
There is a trial in Monterrey, Mexico that is strictly for children suffering from DIPG and for the first time there seems to be some positive results and there is a glimmer of hope. The head doctor in this trial is reviewing Joey's case right now and in the next few days they will hear if he gets accepted into this trial. The treatment is called Intra-Arterial Immunotherapy. To read more about the miracles in Monterrey, please click the link below:
https://www.facebook.com/dipgkids/posts/414621392237199:0
The treatment in Mexico is quite involved. It requires long stays and multiple visits. Each treatment is roughly $30,000, which does not include flights, housing, food, and any other expenses that may occur. Estimates from some families that are currently in the trial are around $300,000 total.
Joe, along with Carolynn, will go to the ends of the earth to try to save Joey's life. You do not even have to be a parent to understand that. Unfortunately, time is of the utmost importance. DIPG waits for no one and can take your child's life in the matter of days.
When Joey was diagnosed there were 5 other kids with DIPG in Illinois. We have heard that Joey is the only child in the Illinois area that is still here with us and fighting! Sadly, all of the other children have passed away since Joey's diagnosis.
The thing that many of you may already know is that Joe and Carolynn are filled with the Holy Spirit and believe there is hope for Joey. Miracles happen every single day. Faith in the Lord and faith in their family have gotten them this far. Please help in any way possible.
As always the most important thing is prayer. Prayers for Joey every single day. Prayers that there is Hope and that Joey's miracle is still possible!
Thank you from the bottom of our hearts. We look forward to this event with those who want to help The Ventimiglia Family! Let's help Joey's Journey....Let's defeat DIPG!!!
If you would like to make a donation today, here is the link to Joey's GoFundMe page:
https://www.gofundme.com/2rptrabk
Thank you! #PrayForJoey #TeamJoey #Believe
https://www.defeatdipg.org/dipg-facts/overview/what-is-dipg/
Back in December, Joey had his first MRI after his 30-day radiation treatment was over. It showed significant shrinkage- 54% to be exact! We all celebrated when we heard the news! Three months went by and his tumor proved to be holding stable at a shrinkage of 54%! So, all was well until about 3 weeks ago. Joey began to show signs of a possible setback- not running as fast as he was, not hitting the baseball as hard as he used to. More recently, he hasn't been steady on his feet and has to do one stair at a time, he trips a lot and wobbles as he walks. On Tuesday 6/27, they learned that Joey's tumor is in a progressive state. It has grown 20% since his last MRI. This tumor is a demon that grows until the child cannot move, talk, see, swallow or chew anymore- until it ultimately steals their life.
Now, there are quick decisions that need to be made. Joe and Carolynn have to decide how to try to best help Joey. They have been praying, researching, planning, talking to experts all over the world, reaching out to everyone who has a connection to DIPG in hopes to make the best deicision possible for their son, Joey. Trials are the only answer they have. There are very few in the states as of right now and some out of the country. These trials are not government funded nor covered by insurance, so their family must pay out of pocket. There is no price on the life of their 7 year old boy. God willing, there is a miracle for Joey.
There is a trial in Monterrey, Mexico that is strictly for children suffering from DIPG and for the first time there seems to be some positive results and there is a glimmer of hope. The head doctor in this trial is reviewing Joey's case right now and in the next few days they will hear if he gets accepted into this trial. The treatment is called Intra-Arterial Immunotherapy. To read more about the miracles in Monterrey, please click the link below:
https://www.facebook.com/dipgkids/posts/414621392237199:0
The treatment in Mexico is quite involved. It requires long stays and multiple visits. Each treatment is roughly $30,000, which does not include flights, housing, food, and any other expenses that may occur. Estimates from some families that are currently in the trial are around $300,000 total.
Joe, along with Carolynn, will go to the ends of the earth to try to save Joey's life. You do not even have to be a parent to understand that. Unfortunately, time is of the utmost importance. DIPG waits for no one and can take your child's life in the matter of days.
When Joey was diagnosed there were 5 other kids with DIPG in Illinois. We have heard that Joey is the only child in the Illinois area that is still here with us and fighting! Sadly, all of the other children have passed away since Joey's diagnosis.
The thing that many of you may already know is that Joe and Carolynn are filled with the Holy Spirit and believe there is hope for Joey. Miracles happen every single day. Faith in the Lord and faith in their family have gotten them this far. Please help in any way possible.
As always the most important thing is prayer. Prayers for Joey every single day. Prayers that there is Hope and that Joey's miracle is still possible!
Thank you from the bottom of our hearts. We look forward to this event with those who want to help The Ventimiglia Family! Let's help Joey's Journey....Let's defeat DIPG!!!
If you would like to make a donation today, here is the link to Joey's GoFundMe page:
https://www.gofundme.com/2rptrabk
Thank you! #PrayForJoey #TeamJoey #Believe
Organizer and beneficiary
Kelly Kane Therapos
Organizer
Darien, IL
Carolynn Ventimiglia
Beneficiary