SUPPORT KYLE'S FIGHT AGAINST MS
Donation protected
Hi, we are the Couillard's!
Kyle, Renee, Lydia, Melody, Adeline, Bradley, Oliver and baby on the way.
What you may not know by just looking at us, is that this is Renee's second marriage. Her first husband (and Lydia, Melody, and Adeline's daddy), Michael, died tragically and unexpectedly in 2010. We were all devastated and heartbroken. Happiness and love seemed light years away for Renee. And the girls were left without their incredible father.
Then came Kyle.
He brought joy and laughter and hope back to our family. He made promises and he kept them: to love Renee with all that he had, and to be the best 2nd dad the girls could ever ask for.
Joy returned. Happiness was overflowing. Oliver and Bradley were born. Life was beautiful and busy and full.
Then came the Multiple Sclerosis diagnosis.
Unbeknownst to him, Kyle had been having symptoms on and off since he was 18 years old. In 2015, these symptoms got progressively worse. Besides being in severe pain in his right shoulder, he began to lose strength in his hand. He would be on stage and found himself unable to even hold a guitar pick. After going to physical therapy for 5 weeks with no improvement, we went to see his doctor who recommended he get an MRI. The scans confirmed he had Multiple Sclerosis (MS for short).
We were devastated.
Here are some facts about MS and Kyle’s diagnosis/treatment:
MS is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.
The cause of MS is still unknown.
Most people with MS are diagnosed between the ages of 20 and 50.
The progress, severity and specific symptoms of MS varies depending on the type of MS.
The type Kyle has been diagnosed with is called Relapsing/Remitting MS (RRMS for short).
Relapsing-remitting multiple sclerosis (RRMS) is the most common form of multiple sclerosis (MS). MS is an autoimmune disease that causes inflammation of the insulating membranes (myelin) that surround nerves within the central nervous system.
In RRMS, there are clear episodes of inflammatory activity (relapses). During a relapse, there are new or worsening symptoms. Relapses are also called attacks, flare-ups, or exacerbations. Relapses are followed by remission, during which the disease does not progress. Residual symptoms may remain during remission. People with RRMS may go on to develop a progressive form of the disease.
Symptoms are extremely variable in RRMS. Overwhelming fatigue is a common debilitating symptom. One of the first signs of MS may be double vision or partial blindness. Other symptoms include numbness, spasticity, and balance issues. In some cases, emotional changes or cognitive dysfunction can occur.
People with relapsing remitting MS often go years without treatment because it can be very hard to diagnose and symptoms can come and go between the attacks. Natural history studies of MS indicate that the majority of people eventually transition from a relapsing-remitting (RRMS) disease course to a more progressive one. While the disease-modifying therapies help to reduce the number and severity of relapses (also called attacks or exacerbations) in relapsing forms of MS, and seem to have some impact on disease progression, they are unable to halt the progression completely.
In secondary-progressive MS, a transition occurs from the more inflammatory disease process seen in RRMS to a more steadily progressive phase of the disease characterized by greater nerve damage or loss.
As soon as Kyle was diagnosed he began a very aggressive treatment to slow the progression of MS. His neurologists has been very concerned from the beginning because of the amount and placement of the scars he already has, the symptoms he already has, and his young age. Unfortunately, he did not respond to the treatment he has been on this past year and has continued to develop new lesions and symptoms.
He is now currently switching to a new medication called Tysabri in hopes of slowing the progression. As with most drugs, there are risks linked to the long term use of Tysabri. The main risk is a potentially fatal brain infection called Progressive Multifocal Leukoencephalopathy (PML). PML is caused by the JC virus, a common virus completely unrelated to MS. It has been confirmed that Kyle does carry the JC virus. This means he will only be able to receive the new infusion treatment for two years at the very most. After two years, the risk of getting PML will be too high to continue. Besides Tysabri, all that is left for treatment for Kyle would be a possible trial with a new drug that MIGHT be released within two years, but there will be no guarantee that a new drug will even be released and that he would even respond well to these drugs. We began to read and study all that we could until we came to the conclusion (and at the strong suggestion of our Neurologist) that a Hematopoietic Stem Cell Transplant (HSCT) in Florence, Italy would be the very best option for him.
The treatment includes intense chemotherapy and bone marrow transplant at the Carreggi University Hospital in Florence, Italy and would be administered by Dr. Riccardo Saccardi. They only accept 12 applicants per year based on who they think qualify as the most likely to undergo treatment successfully. The day Kyle was approved for treatment brought new hope to our family.
Kyle's Neurologist, Dr. Lavy, has worked with Dr. Saccardi over the last year and is confident in this treatment for Kyle. We were fortunate to connect in person to a woman who had the same treatment in Italy and we have connected with many other patients online with similar success stories. We are hoping if all goes well, Kyle will be able to undergo treatment within the next 6 months to a year. This treatment will most likely halt the progression of his MS for the next 10 to 15 years, allow his current scars to heal, and make it possible for him to remain mobile! The results from this specific treatment have been remarkable and have given many patients their lives back and freed them from the debilitating symptoms of MS.
If you’d like more information on the treatment please feel free to personally reach out to us via this gofundme campaign.
HERE ARE THE DETAILS OF THE TREATMENT:
For MS, Dr Saccardi uses a two-phase protocol. In the first-phase, a high dose of cyclophosphamide (chemotherapy) together with GCS-F is given. This will promote the safe production and liberation of haematopoietic stem cells (progenitors of blood cells) from the bone marrow into the blood stream. The first phase takes around 2 weeks time and ends with the harvest of the stem cells from the blood which then will be stored in liquid nitrogen. The second phase takes place around 4-6 weeks later and applies a cocktail of different chemotherapy agents (BEAM/ATG) to almost entirely destroy the faulty immune system before stem cells are given back. Those new stem cells are then believed to build up from scratch a new and hopefully tolerant immune system. The second phase lasts around 3-4 weeks and patients are put under constant surveillance into a germ-free environment (isolation).
COST
The Cost of just the treatment is $60,000.
Depending on the availability of rooms he may be able to stay in the AIL during the time of treatment. The AIL is very close to the hospital and is free of cost. It is a basic accommodation but has everything Kyle will need during the time he must remain close to the hospital, but not be staying in the hospital.
They also will not accept you into the program unless you have a full time caregiver. Since Renee will need to stay at home with their 5 kids and is pregnant, Kyle’s mom is willing to be there throughout the treatment. However, we will need to raise sufficient funds to pay for her and Kyle’s flights, possible rental costs, food and supplemental income since his mom will be unable to work to pay her mortgage.
Besides the cost of the treatment in Italy, there are also many tests and the first stage of chemo that will need to take place in the US before he can leave. Those costs can range from $15-25k depending on how much we can try to get our medical to cover and if Kyle's able to move through treatment without hospitalization.
Additionally, Renee and Kyle run a business together that is there sole income. They will need to hire someone to help Renee keep the business going while he is away.
We have estimated that we will need to raise 130k to cover these expenses plus his 3 month after care where he will still be in semi-isolation until he has regained full strength.
The next phase of the process including starting the tests here and booking our flights hinges on being able to raise the funds. We need to get this procedure done ASAP while Kyle remains a prime candidate, if he has another major relapse he will most likely be moved back to a waiting list.
Although that seems like SO much,
IF 6,500 PEOPLE DONATE $20 WE'VE REACHED OUR GOAL.
IF 2,600 PEOPLE DONATE $50 WE'VE REACHED OUR GOAL.
IF 1,300 PEOPLE DONATE $100 WE'VE REACHED OUR GOAL.
IF 650 PEOPLE DONATE $200 WE'VE REACHED OUR GOAL.
IF 433 PEOPLE DONATE $300
The internet is such a powerful tool to reach people. We ask that if you can not donate today that you would share with others this great need!
We are asking for your love and support towards our family and Kyle's treatment. Your donation, large or small, will not just go towards Kyle's treatment, but towards his future with our family. We can not thank you enough for helping lift this heavy burden and being apart of making this dream come true!
If you’d like to hear a more in depth view of how we met feel free to watch our wedding video here.
Kyle, Renee, Lydia, Melody, Adeline, Bradley, Oliver and baby on the way.
What you may not know by just looking at us, is that this is Renee's second marriage. Her first husband (and Lydia, Melody, and Adeline's daddy), Michael, died tragically and unexpectedly in 2010. We were all devastated and heartbroken. Happiness and love seemed light years away for Renee. And the girls were left without their incredible father.
Then came Kyle.
He brought joy and laughter and hope back to our family. He made promises and he kept them: to love Renee with all that he had, and to be the best 2nd dad the girls could ever ask for.
Joy returned. Happiness was overflowing. Oliver and Bradley were born. Life was beautiful and busy and full.
Then came the Multiple Sclerosis diagnosis.
Unbeknownst to him, Kyle had been having symptoms on and off since he was 18 years old. In 2015, these symptoms got progressively worse. Besides being in severe pain in his right shoulder, he began to lose strength in his hand. He would be on stage and found himself unable to even hold a guitar pick. After going to physical therapy for 5 weeks with no improvement, we went to see his doctor who recommended he get an MRI. The scans confirmed he had Multiple Sclerosis (MS for short).
We were devastated.
Here are some facts about MS and Kyle’s diagnosis/treatment:
MS is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.
The cause of MS is still unknown.
Most people with MS are diagnosed between the ages of 20 and 50.
The progress, severity and specific symptoms of MS varies depending on the type of MS.
The type Kyle has been diagnosed with is called Relapsing/Remitting MS (RRMS for short).
Relapsing-remitting multiple sclerosis (RRMS) is the most common form of multiple sclerosis (MS). MS is an autoimmune disease that causes inflammation of the insulating membranes (myelin) that surround nerves within the central nervous system.
In RRMS, there are clear episodes of inflammatory activity (relapses). During a relapse, there are new or worsening symptoms. Relapses are also called attacks, flare-ups, or exacerbations. Relapses are followed by remission, during which the disease does not progress. Residual symptoms may remain during remission. People with RRMS may go on to develop a progressive form of the disease.
Symptoms are extremely variable in RRMS. Overwhelming fatigue is a common debilitating symptom. One of the first signs of MS may be double vision or partial blindness. Other symptoms include numbness, spasticity, and balance issues. In some cases, emotional changes or cognitive dysfunction can occur.
People with relapsing remitting MS often go years without treatment because it can be very hard to diagnose and symptoms can come and go between the attacks. Natural history studies of MS indicate that the majority of people eventually transition from a relapsing-remitting (RRMS) disease course to a more progressive one. While the disease-modifying therapies help to reduce the number and severity of relapses (also called attacks or exacerbations) in relapsing forms of MS, and seem to have some impact on disease progression, they are unable to halt the progression completely.
In secondary-progressive MS, a transition occurs from the more inflammatory disease process seen in RRMS to a more steadily progressive phase of the disease characterized by greater nerve damage or loss.
As soon as Kyle was diagnosed he began a very aggressive treatment to slow the progression of MS. His neurologists has been very concerned from the beginning because of the amount and placement of the scars he already has, the symptoms he already has, and his young age. Unfortunately, he did not respond to the treatment he has been on this past year and has continued to develop new lesions and symptoms.
He is now currently switching to a new medication called Tysabri in hopes of slowing the progression. As with most drugs, there are risks linked to the long term use of Tysabri. The main risk is a potentially fatal brain infection called Progressive Multifocal Leukoencephalopathy (PML). PML is caused by the JC virus, a common virus completely unrelated to MS. It has been confirmed that Kyle does carry the JC virus. This means he will only be able to receive the new infusion treatment for two years at the very most. After two years, the risk of getting PML will be too high to continue. Besides Tysabri, all that is left for treatment for Kyle would be a possible trial with a new drug that MIGHT be released within two years, but there will be no guarantee that a new drug will even be released and that he would even respond well to these drugs. We began to read and study all that we could until we came to the conclusion (and at the strong suggestion of our Neurologist) that a Hematopoietic Stem Cell Transplant (HSCT) in Florence, Italy would be the very best option for him.
The treatment includes intense chemotherapy and bone marrow transplant at the Carreggi University Hospital in Florence, Italy and would be administered by Dr. Riccardo Saccardi. They only accept 12 applicants per year based on who they think qualify as the most likely to undergo treatment successfully. The day Kyle was approved for treatment brought new hope to our family.
Kyle's Neurologist, Dr. Lavy, has worked with Dr. Saccardi over the last year and is confident in this treatment for Kyle. We were fortunate to connect in person to a woman who had the same treatment in Italy and we have connected with many other patients online with similar success stories. We are hoping if all goes well, Kyle will be able to undergo treatment within the next 6 months to a year. This treatment will most likely halt the progression of his MS for the next 10 to 15 years, allow his current scars to heal, and make it possible for him to remain mobile! The results from this specific treatment have been remarkable and have given many patients their lives back and freed them from the debilitating symptoms of MS.
If you’d like more information on the treatment please feel free to personally reach out to us via this gofundme campaign.
HERE ARE THE DETAILS OF THE TREATMENT:
For MS, Dr Saccardi uses a two-phase protocol. In the first-phase, a high dose of cyclophosphamide (chemotherapy) together with GCS-F is given. This will promote the safe production and liberation of haematopoietic stem cells (progenitors of blood cells) from the bone marrow into the blood stream. The first phase takes around 2 weeks time and ends with the harvest of the stem cells from the blood which then will be stored in liquid nitrogen. The second phase takes place around 4-6 weeks later and applies a cocktail of different chemotherapy agents (BEAM/ATG) to almost entirely destroy the faulty immune system before stem cells are given back. Those new stem cells are then believed to build up from scratch a new and hopefully tolerant immune system. The second phase lasts around 3-4 weeks and patients are put under constant surveillance into a germ-free environment (isolation).
COST
The Cost of just the treatment is $60,000.
Depending on the availability of rooms he may be able to stay in the AIL during the time of treatment. The AIL is very close to the hospital and is free of cost. It is a basic accommodation but has everything Kyle will need during the time he must remain close to the hospital, but not be staying in the hospital.
They also will not accept you into the program unless you have a full time caregiver. Since Renee will need to stay at home with their 5 kids and is pregnant, Kyle’s mom is willing to be there throughout the treatment. However, we will need to raise sufficient funds to pay for her and Kyle’s flights, possible rental costs, food and supplemental income since his mom will be unable to work to pay her mortgage.
Besides the cost of the treatment in Italy, there are also many tests and the first stage of chemo that will need to take place in the US before he can leave. Those costs can range from $15-25k depending on how much we can try to get our medical to cover and if Kyle's able to move through treatment without hospitalization.
Additionally, Renee and Kyle run a business together that is there sole income. They will need to hire someone to help Renee keep the business going while he is away.
We have estimated that we will need to raise 130k to cover these expenses plus his 3 month after care where he will still be in semi-isolation until he has regained full strength.
The next phase of the process including starting the tests here and booking our flights hinges on being able to raise the funds. We need to get this procedure done ASAP while Kyle remains a prime candidate, if he has another major relapse he will most likely be moved back to a waiting list.
Although that seems like SO much,
IF 6,500 PEOPLE DONATE $20 WE'VE REACHED OUR GOAL.
IF 2,600 PEOPLE DONATE $50 WE'VE REACHED OUR GOAL.
IF 1,300 PEOPLE DONATE $100 WE'VE REACHED OUR GOAL.
IF 650 PEOPLE DONATE $200 WE'VE REACHED OUR GOAL.
IF 433 PEOPLE DONATE $300
WE WOULD REACH OUR GOAL OF 130K
The internet is such a powerful tool to reach people. We ask that if you can not donate today that you would share with others this great need!
We are asking for your love and support towards our family and Kyle's treatment. Your donation, large or small, will not just go towards Kyle's treatment, but towards his future with our family. We can not thank you enough for helping lift this heavy burden and being apart of making this dream come true!
If you’d like to hear a more in depth view of how we met feel free to watch our wedding video here.
Organizer
Kyle James Couillard
Organizer
Spirit Lake, ID
