Caring for Connor (Lagrone)
Donation protected
Connor Lagrone, age 10 (son of Matthew and Heidi Lagrone), has not only suffered from PANDAS for the last 7 years but has recently been diagnosed with another horrible condition known as CVID. His parents are unsure of his prognosis or how much his little body can handle and are devastated that he is battling so much at such a young age. I’ve pasted more about his medical journey below, written by his mother.
Recently he traveled to New Jersey to see a specialist in the field. Connor’s medical insurance did not cover this and his parents paid out of pocket to ensure Connor has a fighting chance. The doctor made it clear that Connor is one of the worst cases of PANDAS he has ever seen and he is the one that diagnosed him with CVID. He told them that Connor desperately needs IVIG treatments every 3-4 weeks, and that he will likely need this therapy for the rest of his life as there is no cure. IVIG treatments are approximately $10,000 each time! And he will have to travel back to New Jersey at least for the first one.
His family did not ask ask for financial help, they have only asked for the prayers of everyone who is willing. Please join me in praying fervently for Connor’s health, for insurance to begin paying for his treatments, and for his family as a whole as they work through all of this together.
But, we are called, as Christ-followers, to help those in need and I pray that EVERYBODY will also choose to help this family in any way they can so that the burden of his first treatment is covered. Any and all money raised will go directly to the family to use for medical bills, prescriptions, and travel costs associated with his treatments.
Another way you can help us by sharing this on social media for your friends to see. Sharing allows more people to read Connor’s story and join us in supporting this family through prayer and giving.
Thank you and please read more about Connor’s story below!!!
Connor is a 10 year old that loves soccer, playing outside, watching movies, eating Reese’s, and spending time with his family. Unfortunately, he has been very sick over the last 7 years. It all begins with a tick bite. We have seen many doctors and even took him to Boston Children’s Hospital to no avail. Connor suffers from confusional migraines, massive nosebleeds, abdominal migraines (CVS), anxiety, OCD, focal seizures, and behavior changes. After years of trying to get questions answered and no one being able to figure anything out. We were given the name of a doctor in Little Rock that really helped our baby out. Connor was diagnosed with P.A.N.D.A.S. on February 28, 2015. P.A.N.D.A.S stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. His has been on consent antibiotics along with many other medications for over three years now. However, he was still not getting better. We have always been really careful about having him around people that are sick with strep because of what could happen. Because he wasn’t getting any better we decided to look to one of the experts in this illness and we decided to go to New Jersey and see Dr. Rosario Trifilletti.
Dr. Trifilletti was really an answer to prayers because he knew what to test him for and didn’t take his time. However, when we had our follow up, we got news no parent ever wants to get. Connor was diagnosed with CVID (Common Variable Immune Deficiency) it is a disorder that impairs the immune system. He is more susceptible to infections from both bacteria and viruses. He is more at risk for recurrent infections in his lungs, sinuses, and ears. Connor’s immune system is almost non-existence; his immunoglobulin’s are very deficient. Along with that, his white blood cells are very low (killer cells and his helper cells). Since his body isn’t producing antibodies, which are proteins, your body makes to fight infections. His body is now breaking down his own muscle thinking its not getting enough protein. We also found out that his vitamin B12 is very deficient. One of the tests that he had done is known as MMA (Methylmalonic Acid) it is used to help diagnose rare metabolic disorder. We also found out that he has four active viral infections and we are not sure how long he has had them.
With all of that, we had to look at what treatment options were best for Connor. There really was only a couple. Connor is going to have to start undergoing a treatment called IVIG (Intravenous immunoglobulin), and he will have to have the treatments every 3-4 weeks for the rest of his life. He will have an IV placed and under go the infusions that consist of immunoglobulin from plasma. The infusions will take place over two days. This treatment are expensive and we will have to have the first treatment in New Jersey, and after that we will be able to have them here in Little Rock.
Recently he traveled to New Jersey to see a specialist in the field. Connor’s medical insurance did not cover this and his parents paid out of pocket to ensure Connor has a fighting chance. The doctor made it clear that Connor is one of the worst cases of PANDAS he has ever seen and he is the one that diagnosed him with CVID. He told them that Connor desperately needs IVIG treatments every 3-4 weeks, and that he will likely need this therapy for the rest of his life as there is no cure. IVIG treatments are approximately $10,000 each time! And he will have to travel back to New Jersey at least for the first one.
His family did not ask ask for financial help, they have only asked for the prayers of everyone who is willing. Please join me in praying fervently for Connor’s health, for insurance to begin paying for his treatments, and for his family as a whole as they work through all of this together.
But, we are called, as Christ-followers, to help those in need and I pray that EVERYBODY will also choose to help this family in any way they can so that the burden of his first treatment is covered. Any and all money raised will go directly to the family to use for medical bills, prescriptions, and travel costs associated with his treatments.
Another way you can help us by sharing this on social media for your friends to see. Sharing allows more people to read Connor’s story and join us in supporting this family through prayer and giving.
Thank you and please read more about Connor’s story below!!!
Connor is a 10 year old that loves soccer, playing outside, watching movies, eating Reese’s, and spending time with his family. Unfortunately, he has been very sick over the last 7 years. It all begins with a tick bite. We have seen many doctors and even took him to Boston Children’s Hospital to no avail. Connor suffers from confusional migraines, massive nosebleeds, abdominal migraines (CVS), anxiety, OCD, focal seizures, and behavior changes. After years of trying to get questions answered and no one being able to figure anything out. We were given the name of a doctor in Little Rock that really helped our baby out. Connor was diagnosed with P.A.N.D.A.S. on February 28, 2015. P.A.N.D.A.S stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. His has been on consent antibiotics along with many other medications for over three years now. However, he was still not getting better. We have always been really careful about having him around people that are sick with strep because of what could happen. Because he wasn’t getting any better we decided to look to one of the experts in this illness and we decided to go to New Jersey and see Dr. Rosario Trifilletti.
Dr. Trifilletti was really an answer to prayers because he knew what to test him for and didn’t take his time. However, when we had our follow up, we got news no parent ever wants to get. Connor was diagnosed with CVID (Common Variable Immune Deficiency) it is a disorder that impairs the immune system. He is more susceptible to infections from both bacteria and viruses. He is more at risk for recurrent infections in his lungs, sinuses, and ears. Connor’s immune system is almost non-existence; his immunoglobulin’s are very deficient. Along with that, his white blood cells are very low (killer cells and his helper cells). Since his body isn’t producing antibodies, which are proteins, your body makes to fight infections. His body is now breaking down his own muscle thinking its not getting enough protein. We also found out that his vitamin B12 is very deficient. One of the tests that he had done is known as MMA (Methylmalonic Acid) it is used to help diagnose rare metabolic disorder. We also found out that he has four active viral infections and we are not sure how long he has had them.
With all of that, we had to look at what treatment options were best for Connor. There really was only a couple. Connor is going to have to start undergoing a treatment called IVIG (Intravenous immunoglobulin), and he will have to have the treatments every 3-4 weeks for the rest of his life. He will have an IV placed and under go the infusions that consist of immunoglobulin from plasma. The infusions will take place over two days. This treatment are expensive and we will have to have the first treatment in New Jersey, and after that we will be able to have them here in Little Rock.
Organizer and beneficiary
Jordan Douglas Malone
Organizer
Little Rock, AR
Heidi Lagrone
Beneficiary