Help Brogan beat MS with HSCT treatment.
Donation protected
In April of this year I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS).
For those of you that don’t know much about the disease. Multiple Sclerosis has no cure and is a lifelong condition that affects the nerves, spinal cord, and the brain. This happens when my own body’s immune system mistakenly attacks a healthy part of my body – in this case it damages and destroys the fatty substance that coats and protects my nerve fibres called the Myelin Sheath.
When the Myelin Sheath is being damaged by my faulty immune system this is where a relapse occurs, basically meaning anything from loss of vision, loss of mobility, loss of balance, loss of sensation and many, many more devastating outcomes. Once the Myelin Sheath has been damaged so many times that my body cannot repair itself, it then becomes a permanent disabling disease.
The diagnosis came as a truly devastating shock and our world has truly been turned upside down. We have been non-stop researching all aspects of treatments of which there are a number however all come with some serious side effects.
We have found a treatment called Haematopoietic Stem Cell Transplantation (HSCT). This treatment is the only one of its kind out there and the only one that’s aim is to halt the disease in its tracks. This is an intense chemotherapy treatment (four chemotherapy infusions) aimed to stop the damage that MS causes by completely wiping out and regrowing my immune system using stem cells from my bone marrow. This treatment is 28 days long.
There are other treatments available out there but HSCT is the only one designed for halting the progression of the disease whereas ALL the other treatments are designed to slow the disease down which does not stop the inevitable.
I do not qualify for the treatment on the NHS as I was informed by my Neurologist that I must be seen failing the other delaying treatments before I could get this on the NHS – my view is that why would I possibly wait to worsen the disease and potentially end up with a permanent disability and run the risk of being put into a wheelchair that cannot be reversed!!
I am looking to pay privately for this treatment at Clinica Ruiz which is in Mexico. All I want is to live a healthy life and be able to watch our little girl grow up without worrying that my next relapse will rob me of my vision so that I’ll never be able to see my little girl again. Or that this horrific disease will rob me of my ability to walk and play with my daughter like every mother should be entitled to do.
The treatment alone is at a cost of $54,500.00. This does not cover our travel to Mexico and back. This does not cover our private medical care when we arrive back into the UK which will result in bloodwork being taken and interpreted by the Haematologist to ensure my body is recovering from the harsh treatment as it should.
We are trying to raise funds to help relieve some financial burden that we are about to face.
The funds need raised and paid in full by the 30.06.21 to avoid further delay to have the treatment on the 30.08.21.
We have done hours and hours of research through every possible avenue, like speaking to professional Neurologists, through webinars with Professors who have spent the majority of their career being devoted to MS & HSCT and through speaking to many people who have had this treatment. Please don’t think we have came to this decision lightly and although it will be a horrific 4 weeks of treatment; I am willing to go through it all knowing that it gives me the best chance to stop this disease from taking my freedom away.
Thank you so much if you’ve read this far and we honestly appreciate any donation possible to help us fight this disease head on!!
For those of you that don’t know much about the disease. Multiple Sclerosis has no cure and is a lifelong condition that affects the nerves, spinal cord, and the brain. This happens when my own body’s immune system mistakenly attacks a healthy part of my body – in this case it damages and destroys the fatty substance that coats and protects my nerve fibres called the Myelin Sheath.
When the Myelin Sheath is being damaged by my faulty immune system this is where a relapse occurs, basically meaning anything from loss of vision, loss of mobility, loss of balance, loss of sensation and many, many more devastating outcomes. Once the Myelin Sheath has been damaged so many times that my body cannot repair itself, it then becomes a permanent disabling disease.
The diagnosis came as a truly devastating shock and our world has truly been turned upside down. We have been non-stop researching all aspects of treatments of which there are a number however all come with some serious side effects.
We have found a treatment called Haematopoietic Stem Cell Transplantation (HSCT). This treatment is the only one of its kind out there and the only one that’s aim is to halt the disease in its tracks. This is an intense chemotherapy treatment (four chemotherapy infusions) aimed to stop the damage that MS causes by completely wiping out and regrowing my immune system using stem cells from my bone marrow. This treatment is 28 days long.
There are other treatments available out there but HSCT is the only one designed for halting the progression of the disease whereas ALL the other treatments are designed to slow the disease down which does not stop the inevitable.
I do not qualify for the treatment on the NHS as I was informed by my Neurologist that I must be seen failing the other delaying treatments before I could get this on the NHS – my view is that why would I possibly wait to worsen the disease and potentially end up with a permanent disability and run the risk of being put into a wheelchair that cannot be reversed!!
I am looking to pay privately for this treatment at Clinica Ruiz which is in Mexico. All I want is to live a healthy life and be able to watch our little girl grow up without worrying that my next relapse will rob me of my vision so that I’ll never be able to see my little girl again. Or that this horrific disease will rob me of my ability to walk and play with my daughter like every mother should be entitled to do.
The treatment alone is at a cost of $54,500.00. This does not cover our travel to Mexico and back. This does not cover our private medical care when we arrive back into the UK which will result in bloodwork being taken and interpreted by the Haematologist to ensure my body is recovering from the harsh treatment as it should.
We are trying to raise funds to help relieve some financial burden that we are about to face.
The funds need raised and paid in full by the 30.06.21 to avoid further delay to have the treatment on the 30.08.21.
We have done hours and hours of research through every possible avenue, like speaking to professional Neurologists, through webinars with Professors who have spent the majority of their career being devoted to MS & HSCT and through speaking to many people who have had this treatment. Please don’t think we have came to this decision lightly and although it will be a horrific 4 weeks of treatment; I am willing to go through it all knowing that it gives me the best chance to stop this disease from taking my freedom away.
Thank you so much if you’ve read this far and we honestly appreciate any donation possible to help us fight this disease head on!!
Organizer
Brogan Johnston
Organizer
England
