The Dylan Fund
Donation protected
As some of you may know through my stories on Instagram, about a year ago, my twin brother Dylan was diagnosed with a highly aggressive form of a rare kidney disease called Idiopathic Membranous Nephropathy (IMN).
Given that he was only 34 years old and a father of two young daughters, Kinsley and Quinn, our family and friends were beside ourselves upon hearing his diagnosis.
He was told his “best” option for treatment was completing chemotherapy which had a limited chance of working and an over 80% chance of causing additional serious complications like a variety of cancers and infection.
Regardless of the treatment option(s) chosen, his kidney function would continue to deteriorate, and he was told he would eventually need a transplant as it was only a matter of time before his kidneys would fail.
Despite the grave report, Dylan began treatment, thoroughly researched all of his options, and was pursuing Renal Replacement Therapy (RRT) when things took a turn for the worse.
The IMN had progressed, caused additional health issues, and resulted in him being readmitted to the hospital in early May 2018. Dylan’s kidney function had rapidly declined, his body was poisoning itself, and he was on the verge of death. He was given multiple blood transfusions, underwent surgery, and was immediately put on dialysis in order to clear the toxins from his body to save his life.
After weeks in the hospital, we received heartbreaking news. He was diagnosed with atypical Hemolytic Uremic Syndrome (aHUS), a second “ultra rare” disease for which the only medication to keep him alive is a drug called Soliris (one of the world’s most expensive drugs).
We are raising funds so we can:
⁃ help Dylan pursue any and all medical treatment options/services available,
⁃ travel to various hospitals and clinical trial locations offering these services,
⁃ provide some relief to help him enjoy life as he fights for as much more time as possible, and;
⁃ help the medical community and world learn more about these rare diseases.
Please find it in your heart to make a small donation to the Dylan Fund.
We love you, Dylan! Keep on fighting!
About Idiopathic Membraneous Nephropathy (IMN)
⁃ IMN is a “rare” disease that causes the body’s immune system to attack the kidneys for an unknown reason. ⁃ https://www.ncbi.nlm.nih.gov/m/pubmed/21558430/
⁃ https://academic.oup.com/ndt/article/27/1/235/1925872
⁃ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3871776/#!po=27.777
About atypical Hemolytic Uremic System (aHUS)
⁃ aHUS is an “ultra rare” genetic disease caused by a mutation in your DNA, that causes your body to attack the kidneys, heart, liver, and brain.
⁃ It’s a non-curable terminal illness that is estimated to affect only 140k people of the over 7 Billion people in this world.
⁃ The only approved treatment by the FDA is Soliris, one of the worlds most expensive drugs.
⁃ https://www.ahus.org
⁃ https://en.m.wikipedia.orgwikiAtypical_hemolytic_uremic_syndrome
About Soliris
⁃ The cost of Soliris alone is estimated at over $400-500k a year.
⁃ Due to its high cost, it is a continuous battle with insurance companies for coverage of the drug. Often involves weekly disputes between the manufacturer/hospitals providing the drug and insurance companies (e.g. the cost of just transporting the pharmaceutical is so expensive that it is often fought over).
⁃ Made by Alexion Pharmaceuticals who has gone to the point of creating their own internal advocacy group to assist patients in their fight for their right to live regardless of cost.
About Dylan’s Case
⁃ A unique one of a kind situation seen in the medical community.
⁃ He is believed to currently be the only person on record to simultaneously have both MN and aHUS (1 in 7 Billion).
⁃ Is expected to need one infusion of Soliris (at a cost of $19k per infusion) every other week for the rest of his life in addition to dialysis, and a variety of other extremely expensive medications/treatments.
Given that he was only 34 years old and a father of two young daughters, Kinsley and Quinn, our family and friends were beside ourselves upon hearing his diagnosis.
He was told his “best” option for treatment was completing chemotherapy which had a limited chance of working and an over 80% chance of causing additional serious complications like a variety of cancers and infection.
Regardless of the treatment option(s) chosen, his kidney function would continue to deteriorate, and he was told he would eventually need a transplant as it was only a matter of time before his kidneys would fail.
Despite the grave report, Dylan began treatment, thoroughly researched all of his options, and was pursuing Renal Replacement Therapy (RRT) when things took a turn for the worse.
The IMN had progressed, caused additional health issues, and resulted in him being readmitted to the hospital in early May 2018. Dylan’s kidney function had rapidly declined, his body was poisoning itself, and he was on the verge of death. He was given multiple blood transfusions, underwent surgery, and was immediately put on dialysis in order to clear the toxins from his body to save his life.
After weeks in the hospital, we received heartbreaking news. He was diagnosed with atypical Hemolytic Uremic Syndrome (aHUS), a second “ultra rare” disease for which the only medication to keep him alive is a drug called Soliris (one of the world’s most expensive drugs).
We are raising funds so we can:
⁃ help Dylan pursue any and all medical treatment options/services available,
⁃ travel to various hospitals and clinical trial locations offering these services,
⁃ provide some relief to help him enjoy life as he fights for as much more time as possible, and;
⁃ help the medical community and world learn more about these rare diseases.
Please find it in your heart to make a small donation to the Dylan Fund.
We love you, Dylan! Keep on fighting!
About Idiopathic Membraneous Nephropathy (IMN)
⁃ IMN is a “rare” disease that causes the body’s immune system to attack the kidneys for an unknown reason. ⁃ https://www.ncbi.nlm.nih.gov/m/pubmed/21558430/
⁃ https://academic.oup.com/ndt/article/27/1/235/1925872
⁃ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3871776/#!po=27.777
About atypical Hemolytic Uremic System (aHUS)
⁃ aHUS is an “ultra rare” genetic disease caused by a mutation in your DNA, that causes your body to attack the kidneys, heart, liver, and brain.
⁃ It’s a non-curable terminal illness that is estimated to affect only 140k people of the over 7 Billion people in this world.
⁃ The only approved treatment by the FDA is Soliris, one of the worlds most expensive drugs.
⁃ https://www.ahus.org
⁃ https://en.m.wikipedia.orgwikiAtypical_hemolytic_uremic_syndrome
About Soliris
⁃ The cost of Soliris alone is estimated at over $400-500k a year.
⁃ Due to its high cost, it is a continuous battle with insurance companies for coverage of the drug. Often involves weekly disputes between the manufacturer/hospitals providing the drug and insurance companies (e.g. the cost of just transporting the pharmaceutical is so expensive that it is often fought over).
⁃ Made by Alexion Pharmaceuticals who has gone to the point of creating their own internal advocacy group to assist patients in their fight for their right to live regardless of cost.
About Dylan’s Case
⁃ A unique one of a kind situation seen in the medical community.
⁃ He is believed to currently be the only person on record to simultaneously have both MN and aHUS (1 in 7 Billion).
⁃ Is expected to need one infusion of Soliris (at a cost of $19k per infusion) every other week for the rest of his life in addition to dialysis, and a variety of other extremely expensive medications/treatments.
Organizer
Caitlin Anna Maria
Organizer
Westbury, NY
