PPMD's Blog – November 2013 Archive (52)

My BRAVE Story: Many families are willing to accept the risks

My family's journey with Duchenne muscular dystrophy (DMD) begins like most others with the diagnosis of our older son Matthew when my wife and I were very uninformed and naive parents.  Making the situation more problematic was his neurologist not advising us to have our younger son tested mainly because there was no family history and Patrick was thin, strong and his calf hypertrophy wasn't pronounced.  It wasn't long after that we started seeking more relevant information…

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Added by PPMD on November 25, 2013 at 11:59am — No Comments

My BRAVE Story: Please give my children the chance to survive

Both of my children, Jake and Ryan (ages 9 and 6) have Duchenne Muscular Dystrophy.  I watch the older of the two, Jake, struggle as he loses the ability to climb a single step.  I watch as he cannot maneuver his leg above the tub to get into the bath because his muscles are being destroyed by this disease.  I know what is to come, and live in a world of dread and steely determination to fight this thing however I can.  We are willing to risk most anything that would lead to a…

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Added by PPMD on November 25, 2013 at 11:49am — No Comments

My BRAVE Story: It seems to be a losing fight

My brother was born in 1966 and in first grade my dad noticed that he was dragging one of his legs.  They took him to Riley's children's hospital in Indianapolis. He was diagnosed with DMD.  They were told he would live to be twelve. At this time, little was known about this.  I didn't come into the picture until three years later.  I remember the trips to Riley and the testing that was done on him.  In the end, Bill McNear lived to be 23.  Every year I watched this disease take…

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Added by PPMD on November 25, 2013 at 11:44am — No Comments

My BRAVE Story: We don't have time to wait

My 11 year old son Christopher has Duchenne and  every day, I search for new information about anything that may help to save his life. My son also has a rare mutation that may not be amendable to exon skipping genetic therapies that are so promising in Duchenne. It is of upmost importance that our trial pipeline remain full and robust and that promising therapies progress through clinical trials as fast as possible.  We don't have time to wait and are willing to accept…

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Added by PPMD on November 25, 2013 at 11:40am — No Comments

My BRAVE Story: These boys are brave but they are getting tired

While many of my son's middle school friends are just rolling in from practice, its a typical night at my house. Bed time starts no later than 7:00 for my two sons with DMD. Kevin is 13 and Kyle is 9. Their friends grab a snack or start their homework but my boys aren't strong enough to get drinks out of the fridge or pick up their own backpacks. Just like their friends, our home is full of laughter (boys will be boys) but between the requests for help to get on the toilet, off…

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Added by PPMD on November 25, 2013 at 11:36am — No Comments

My BRAVE Story: We don't have years to wait

My name is Angelia Field and I live in St Joseph, Missouri with my husband and children. Our youngest son is one of 5 boys. He was diagnosed with Duchenne Muscular Dystrophy in April of 2010. Nothing in my life has ever compared to hearing this news. I doubt that anything ever will. Thankfully, our other four sons and our daughter are healthy.  Ian is 9 years old now, and is leaving the "honeymoon" phase of this disease. The phase in which he appears to be the most normal. The…

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Added by PPMD on November 25, 2013 at 11:29am — No Comments

My BRAVE Story: What do we have to lose?

My name is Jessica May and my husband is Capt Mark May.  Our 18 month old son, Markie, has Duchenne.  We only found out about his diagnosis less than 4 months ago.  One of the first things were were told is that there's hope and that there are trials going on for some very promising drugs,  drugs that could save our son's life.  If these drugs work and the side effects are worth it, we need them.  We need these medicines for all of our sons and we need them yesterday!  Without…

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Added by PPMD on November 25, 2013 at 11:00am — No Comments

My BRAVE Story: There is hope in the current clinical trials

My son Miles is 4 years old. He was diagnosed with DMD in December of 2011. As any parent would imagine this is a life-changing and devastating thing for a parent to hear. Miles is such a miracle to our family and friends. He can make you smile no matter how bad your day is. Whether it is his captivating smile, hilarious facial expressions, love of dancing or his incredible love and caring about people. We are so blessed to have him in our lives. As any parent would say about…

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Added by PPMD on November 25, 2013 at 10:52am — No Comments

My BRAVE Story: Duchenne effects girls too

I would like them to know that in very rare cases, Duchenne effects girls too. Our daughter has this form of muscular dystrophy. Because she is such a rare case, it is hard to know what to expect in the future. She is 15 and has fairly good health. She has some issues with muscle cramps and not being able to be as steady on her feet. She also has Maligment Hyperthermia.

Thanks for letting me share.

Added by PPMD on November 25, 2013 at 10:48am — No Comments

My BRAVE Story: They need hope, they need a cure, and they can't wait

My son Aaron has been very fortunate so far.  At 11, he is still mobile and at last check had good heart and lung function.  In less than six months, his mobility has become MUCH more challenging for him, though, and I'm called upon to do more and more for him.  I want to do and be everything he needs me to be but I have rheumatoid arthritis (joint deformities and pain) and also work full time to help support our family.  Watching Aaron struggle to do things for himself rather…

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Added by PPMD on November 25, 2013 at 10:41am — No Comments

My BRAVE Story: I don't know what it is like to parent a healthy child

My son is almost 4 years old and has no idea that what lies ahead for him.  I am so hopeful that he will lead a LONG and full life maintaining enough strength and health to be a parent and have meaningful work and relationships.  I have this hope because of the promising research that is being done.  I realize that if this were 10 or 20 years ago, I would not have reason to hope.  Please help fund further research so that my  hope is not in vain.  I don't know what it is like to…

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Added by PPMD on November 20, 2013 at 12:06pm — No Comments

My BRAVE Story: We are parents willing to take risks

Dear FDA Leader,  We are parents willing to take risks.  We understand that if we don't take risks we don't give our DMD kids a chance of a lifetime and a happy lifetime. We also understand that resources to have all the data and information for the ideal FDA approval are not available and we don't have the luxury of time.  DMD is worst than many of the side effects.  Please help us and join us in our journey.  We need you to be on our side! 

Thanks a lot for caring and for…

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Added by PPMD on November 20, 2013 at 12:04pm — No Comments

My BRAVE Story: We ask for better guidelines

My son is 12 and currently he does not fit into any of the active trials. I like other parents with boys the same age struggle to keep him walking so that he will meet the requirements when they start a trial for the drug he will need. We wonder if he will be ineligible becuase he cant meet the requirements and then we have to say well they have something but you cant have it because it took so long to become approved. I know that the FDA is working hard on this and we appreciate…

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Added by PPMD on November 20, 2013 at 12:03pm — No Comments

My BRAVE Story: Early intervention is crucial

Our son is almost 38.  Most of the proposed treatments will have little benefit for our family because of the progression of his disease.  It might clarify things for FDA and Congress to spend a little time with people like us and then maybe some of the trivial elements of healthcare would come into better focus, such as additional taxes on medical materials. We have received a stipend for caring for our son in addition to Social Security and Medicare.  That support has been…

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Added by PPMD on November 20, 2013 at 12:02pm — No Comments

My BRAVE Story: I will continue to believe in the word Hope

A little over a year ago, I heard the word "Duchenne" after our first visit with a Neuromuscular doctor in St.Louis. That visit was the culmination of numerous doctors visits, blood testing and months of agonizing time spent waiting for answers. Her answer was Duchenne.  The next moments were spent telling myself to breathe, literally breathe in and out. Trying to focus with my eyes, ears and mind.  I could not make eye contact with my wife for fear of falling apart. Then walking…

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Added by PPMD on November 20, 2013 at 11:44am — No Comments

My BRAVE Story: All children are valuable and should be treated as precious

It was determined that my son Cody had Duchenne at the age of 3.  He is now 12.  He is 5'5" tall and weights a whopping 68 lbs.  He eats the same as I do but this terrible illness is just eating away his muscles.  He can no longer walk, care for himself, he struggles to speak, and to straighten out his legs or raised his arms over his head.  EMS has been to our house twice in the past year because he has choked on his food and did not have the strength to cough it up on his own.…

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Added by PPMD on November 20, 2013 at 11:41am — No Comments

My BRAVE Story: It rules every aspect of our lives

DMD has stolen my son's ability to live his life with dignity, opportunity, and freedom--all the reasons we came to this country to have children. It rules every aspect of our lives, all in the family are constantly being punished by the effects of this killer disease.

There is no excuse for not spending the monies, giving quicker FDA approval for drugs that work. Every day you procrastinate in your decisions; is a day that has been unashamedly stolen from my son's life, my…

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Added by PPMD on November 20, 2013 at 11:30am — No Comments

My BRAVE Story: Time is something our boys do not have

I recently attended the Advocacy conference in Washington DC and for the first time since my son has been diagnosed I have hope. I sat with a family that has experienced the benefits of Etepliersen. We are so close to a cure! I would do whatever possible to have my son be involved in a clinical trial to help him and others. The science is so promising. All of us as parents know what the outcome is if we don't try something.

I beg you to fast track drugs and treatments…

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Added by PPMD on November 20, 2013 at 11:30am — No Comments

My BRAVE Story: We must expedite the process

My son is 12 years old now, thirteen in July of 2013. I would like to say I am excited to see Cory becoming a teenager but I only watch each passing year with a mixture of joy and dread. Joy that my son is still fully mobile on his own and has very little need for a wheelchair; joy that he is a happy and relatively healthy young man despite his diagnosis; dread that the older he becomes the greater the likelihood he will no longer be the independent young man he is…

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Added by PPMD on November 20, 2013 at 11:14am — No Comments

My BRAVE Story: We have nothing to lose

I'm a mother with two sons who both have Duchenne. Any treatment that has great effects than side effects should be on the market for my children. I can not speak for all parents but for me I pray for anything that will help my sons.Let us pick and choose we have nothing to lose.

Added by PPMD on November 20, 2013 at 11:10am — No Comments

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