Mila's Mission
Donation protected
It was June of 2013, when we learned about the disease, Primary Ciliary Dyskinesia (pri·mar·y cil·i·ar·y dys·ki·ne·sia) or PCD, if you want to be in loop or just have a way of pronouncing it. It was then we were learning not only to be new parents but that we were going to have to battle a rare gentic disease that would NOT get better with age but continue to progress.
PCD stands for primary ciliary dyskinesia, an inherited disorder of motile (moving) cilia. PCD is also sometimes referred to as Kartagener syndrome (PCD with situs inversus) or immotile cilia syndrome.
Effective activity of cilia is required to keep the lungs, sinuses and ears free of organisms and debris that can cause infection and disease. Cilia also are important in helping determine organ placement in the developing embryo and in moving the cells of reproduction into place (egg cells through the ciliated fallopian tube in females and sperm via sperm tails that closely resemble cilia in the male). Motile cilia are also found in the ventricles of the brain.
A person with PCD experiences chronic, recurrent infections in the lungs, ears and sinuses due to the loss of ciliary activity in those areas. Faulty determination of organ placement (aka ‘situs’) may result in reversed organs or in other organ placement/development abnormalities. In very rare instances, PCD may be associated with hydrocephalus, a condition in which excess fluid in the ventricles of the brain causes them to be enlarged.
Lastly, PCD is a genetic disease, so with our powers combined we create this genetic mutation that can cause this disease. That's right, we both have to be carriers of the gene to create the gene mutation for PCD. Funny, someone knew we were meant to be!
So, there is the skinny of the disease. Now, let's get real...throughout Mila's life she has faced countless and chronic ear, sinus and lung infections. Twice a day, every day we do Airway Clearance Therapy (ACT) designed to help clear mucus from her lungs, we usually have an antibiotic we take twice a day, ear drops twice a day, nasal spray and we just started with a nebulizer treatment called, Pulmozyme, which is a common treatment used for those with Cystic Fibrosis that helps thin her mucus and keep infection at bay. We also get her vest for vest therapy in November, and that will take the place of her current ACT therapy that we do. Are you still following? That's okay; we are learning, too!
Mila's Mission is to help generate funds for research. Without those funds we cannot continue the research that is currenlty being done to find new and better treatments, therefore; we will not find a cure. Overall, we want those battling this rare, progressive disease to live the best life and most quality life that they can!
Hint, hint this is where you come in...we ask that you help in furthering Mila's Mission by supporting our fundraiser or donating directly to the website below. We thank you in advance for considering to support those with Primary Ciliary Dyskinesia and give those with this illness strength and endurance to keep fighting! Thank you for helping us all live the best life we can!
www.pcdfoundation.org
Please note that 100% of the funds from this campaign will go to the Primary Ciliary Dyskinesia Foundation to aid in furthering research efforts for this disease.
Loads of love,
Mila, Brent and Brooklyn Burton
PCD stands for primary ciliary dyskinesia, an inherited disorder of motile (moving) cilia. PCD is also sometimes referred to as Kartagener syndrome (PCD with situs inversus) or immotile cilia syndrome.
Effective activity of cilia is required to keep the lungs, sinuses and ears free of organisms and debris that can cause infection and disease. Cilia also are important in helping determine organ placement in the developing embryo and in moving the cells of reproduction into place (egg cells through the ciliated fallopian tube in females and sperm via sperm tails that closely resemble cilia in the male). Motile cilia are also found in the ventricles of the brain.
A person with PCD experiences chronic, recurrent infections in the lungs, ears and sinuses due to the loss of ciliary activity in those areas. Faulty determination of organ placement (aka ‘situs’) may result in reversed organs or in other organ placement/development abnormalities. In very rare instances, PCD may be associated with hydrocephalus, a condition in which excess fluid in the ventricles of the brain causes them to be enlarged.
Lastly, PCD is a genetic disease, so with our powers combined we create this genetic mutation that can cause this disease. That's right, we both have to be carriers of the gene to create the gene mutation for PCD. Funny, someone knew we were meant to be!
So, there is the skinny of the disease. Now, let's get real...throughout Mila's life she has faced countless and chronic ear, sinus and lung infections. Twice a day, every day we do Airway Clearance Therapy (ACT) designed to help clear mucus from her lungs, we usually have an antibiotic we take twice a day, ear drops twice a day, nasal spray and we just started with a nebulizer treatment called, Pulmozyme, which is a common treatment used for those with Cystic Fibrosis that helps thin her mucus and keep infection at bay. We also get her vest for vest therapy in November, and that will take the place of her current ACT therapy that we do. Are you still following? That's okay; we are learning, too!
Mila's Mission is to help generate funds for research. Without those funds we cannot continue the research that is currenlty being done to find new and better treatments, therefore; we will not find a cure. Overall, we want those battling this rare, progressive disease to live the best life and most quality life that they can!
Hint, hint this is where you come in...we ask that you help in furthering Mila's Mission by supporting our fundraiser or donating directly to the website below. We thank you in advance for considering to support those with Primary Ciliary Dyskinesia and give those with this illness strength and endurance to keep fighting! Thank you for helping us all live the best life we can!
www.pcdfoundation.org
Please note that 100% of the funds from this campaign will go to the Primary Ciliary Dyskinesia Foundation to aid in furthering research efforts for this disease.
Loads of love,
Mila, Brent and Brooklyn Burton
Organizer
Brooklyn Cox Burton
Organizer
Lafayette, IN