28 days later

DMD

On September 22, 2015 my husband Trevor and I sat in a room at Children’s Hospital of Philadelphia holding hands and praying that what so many doctors suspected wasn’t our reality. Unfortunately, all of our hope, prayers & positivity couldn’t change the fact that our 10 month old son, Trent, was about to be diagnosed with Duchenne Muscular Dystrophy. The words came out of the doctor’s mouth in what seemed like slow motion and the tears immediately starting flowing along with a feeling (an actual feeling) of my heart breaking into a million pieces. My breathing started to become panicked and I thought I was about to go into a complete state of shock. And then in an instant my husband grabbed my hand and my motherly instincts kicked in. The tears quickly subsided and I had questions- a lot of questions. I needed to know, what can I do for my son? How can I help him?

I decided (28 days later) that writing a blog might be something that can help me express my emotions, document our journey and maybe help others along the way.

If you are planning on following our fight against this horrible disease it’s probably best that I give you a quick summary of what it means to be diagnosed with DMD. Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year worldwide). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures. Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their late twenties. – See more at: http://www.parentprojectmd.org/site/PageServer?pagename=understand_about#.dpuf

Ok, now that you know what we are dealing with you can only imagine how devastating this news is to a family. Everything that we hoped, dreamed and envisioned for our son was quickly ripped from us with three words. In seconds we became overwhelmed with medical jargon and the idea of our son having a limit on his life. He has a long journey ahead and a lot to overcome and the diagnosis is grim. As a parent your mind starts racing and going places no parent’s mind should ever have to go and then you stop and look and realize that you have a beautiful, happy and seemingly healthy baby. When you look at him these thoughts don’t make any sense they seem unreal and impossible but that’s the nature of this terrible disease.

During our drive home, in-between the tears and hyperventilating, Trevor and I decided that we needed to do everything we could to make sure we continue to be the parents we always dreamed of being. We promised to be strong for our son and show him how much he is loved and cared for every day. Most importantly we promised ourselves that every good day Trent has will be a good day for us as well- he deserves all of his good days after all! We also immediately felt an intense need to hold onto the hope that there may be a way to beat this- science is a wonderful thing and there are many people who have dedicated their lives to try and find a way to cure this disease.

Hope is what we have and we are going to fight to help our son. We are going to educate ourselves. We are going to educate others. We are going to raise money. Raise awareness. Fund research. We are going to beat this. This is our battle to save our son. Follow along if you wish. It may not always be easy to read but I promise you that you will be inspired because this love we have for our little boy is a very powerful thing.

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36 thoughts on “28 days later

  1. We are inspired by you, your husband, and your amazing little boy. We are always here by your side every step of the way… when things get tough look into his eyes and see how they make the world shine! God Bless you on this journey! In our thoughts and prayers daily! Much love♡

    Liked by 1 person

  2. Beautiful words, Kim. I don’t think I told you this, but I was so nervous to see you that week when we did pictures, but YOU uplifted me with your positive demeanor and outlook. Thank you. I am sure not all of your days are that strong and that is only natural, but I am sure you know of all of the love and support you have from so many (myself included). I will do anything I can to help your family. Trent is a complete joy to be around…such a special little guy. Much love and good wishes always.

    Liked by 1 person

  3. So much love to you all. We never know the paths that life has in store for us, but as long as we put love and faith in front we can always find hope somewhere along the way. Kim, this is a powerful post and I feel privileged that you have chosen to share your thoughts and feelings here with all of us. Prayers for the three of you and for all who will love and support you.

    Liked by 1 person

  4. You are brave and you will be an inspiration to families for years to come. Your boy is gifted with the 2 of you as his parents. Trevor, you are a fighter and it sounds like you have a soulmate who is just as tough. Take each day slowly, do things with a purpose, and love. Your little guy will feel that every second of every day.

    Liked by 1 person

  5. Kim and Trevor we love you so much and are inspired by the strength you have each day. Trent is so loved by his family and friends. We are always here for you.

    Liked by 1 person

  6. Kim, you are an amazing mom! I can’t imagine what you are going through, but I want you to know that I’m hear to help in raising awareness, money, anything you need to fight this fight! !!

    Liked by 1 person

  7. Dearest Kim and Trevor,

    You are both amazing parents, who have the most beautiful little boy ever! He is loved so very much and know that there are so many people that love you both and Trent. This is a journey that we will all be here together for you all. Trent is a blessed little boy to have you both for parents. Love you all so very much❤️

    Liked by 1 person

  8. Trent is so fortunate to have you both for parents. You will be amazing advocates for that little boy and you will be surrounded by love and support from your friends.

    Liked by 1 person

  9. Powers Fight Duchenne, we are here to cheer you on and to support you as you take on this horrible disease. I believe in the possibility of medical advances and the power of prayer. God Bless Trent and everyone around him.

    Liked by 1 person

  10. Kim and Trevor, you will move mountains for your boy. I already can tell by your resilency in sharing your story. Your writing is powerful and it takes so much courage. This is your mission and I believe in you…

    Liked by 1 person

  11. Kim and Trevor I can not even imagine what you are feeling. Please keep me in the loop so I can help whenever you need it. Be strong! Take one day at a time.

    Liked by 1 person

  12. Kim~
    The greatest strength comes from deep within. Keep fighting for that handsome baby boy and know that prayers do work… My family will continually lift you, your husband and Trent up in prayer.

    Liked by 1 person

  13. You are a gift to that sweet little boy. When you question, cry, believe, feel thankful, feel resentful, imagine, and do it all over again…probably each day… remember that your love is your strength, it’s what he’ll grow up knowing in his heart, it’s all that matters. So…let yourself feel it all…and just love him. And ask us for help with anything else.

    Liked by 1 person

  14. Kim – our prayers are with your family. Keep fighting for your boy! I know your love for him will pull you through this. You worked so hard with Anthony when he was in your class – I know you will move mountains for your own son. You are now a warrior mom! If there is anything our family can do, we will be there.

    With love and support,
    The Pacilio Family

    Liked by 1 person

  15. Kim & Trevor,
    Trent is so beautiful and has already brought so much love to a world that absolutely needs it. His mark on the world has only just begun and already he has brought so many people together. It is from this that your strength will come. We love you guys and look forward to being part of Trent’s life.

    Liked by 1 person

  16. Kim and Trevor. My thoughts, love and prayers are with you and your family. If there is any way our family can support you and this fight please let us know.

    Carrie. Dave. Libby and Maddie Snyder

    Liked by 1 person

  17. Kim, not sure if you remember me from
    BAS PTO. I always told you what an amazing teacher you were and that you were doing exactly what you were meant to do. My friend Sindy (lives in SB) has a son with DMD and is very knowledgeable. I shared your blog with her so maybe she will respond and can answer any questions you have. Please know I will be praying for your family.

    Liked by 1 person

  18. Kim and Trevor,
    Even though I’m thousands of miles away, you will always have my love and support. Trent is lucky to have so many people fighting for him, but especially lucky to have you as parents. Your message is an inspiration, and it’s clear how loved that beautiful boy is.

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  19. Kim, you are such an amazing mother! You and Trevor have been blessed with such a sweet loving little boy! I know you both will give it all you’ve got when it comes to fighting this disease. Just always remember you have a large group in your corner fighting right along with you. We will always be here for you guys! Love you all! 💚💚💚

    Liked by 1 person

  20. You know we are here for you and will help and support you any way we can. You are an amazing person and definitely an incredible mom. We’ll be forever grateful for all the help you have given us and more than willing to help return the favor.

    Liked by 1 person

  21. Kim, You don’t know me but I work with someone very close to you. Nine years ago, our daughter was diagnosed with a rare disorder, Athrochalasia Ehlers-Danlos Syndrome. This particular form of EDS has only been diagnosed in 20 to 30 people throughout the world, so finding anyone in the medical community with knowledge was even more rare.

    EDS is a distant cousin of MD, and for many years, MDA funded the research for it. It is a connective tissue disorder, where the body does not produce enough collagen for ligaments, tendons, and other connective tissue. In the most common type, the symptoms are loose joints and skin. In fact, many of those “double jointed” friends out there have type 1 EDS, a non fatal and very common affliction. In the case of Athrochalasia EDS, the symptoms are much more severe. Yes there are the loose joints that will provide life long dislocations and the characteristic loose skin, but in our case, it also has brought nutrient absorption issues, heart valve issues, as well as slowed physical and mental development.

    I liken our journey over the last ten years to that of a long family road trip vacation. It was not necessarily the vacation that we envisioned for our family when we were first married as we dreamed of being jet setters. But, it was a vacation we could afford and one that would build life long memories. Sandwiched between the many potty stops, unexpected flat tires, back seat fighting between two teenage boys, and the 30th repeat of the “Frozen Sing-a-Long” DVD, there were very special moments. Moments we will remember and cherish for the rest of our lives.

    This is also true with our daughter’s affliction. It is not what we had envisioned for any of our three children, but it was God’s plan for us. Sandwiched between the many doctor’s visits, the arguments between my wife and I on the topic, physical, speech, and occupational therapy, and the many meetings with the school teachers and administrators, we have learned to enjoy the special moments with her. What she lacks in physical and mental capability, she more than doubles in emotional gift giving. There is not a person in her world that she has not personally touched or inspired. She is truly God’s gift to anyone that comes in contact with her. She has become quite the celebrity in our little town, and everyone seems to know her.

    Our journey has taught us many things but I would like to share with you just this one piece of advice. God has a plan for your family. You and your husband do not know or understand that plan right now, but some day you will start to understand it. Remember to cherish the good moments, the milestones, the things that make you smile for there will be many. When you are down about things, I hope you can draw strength from one of my most leaned upon verses.

    “Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable – if anything is excellent or praiseworthy – think about such things.” Philippians 4:8

    I hope the very best for your son and your family. I hope that you find the very best medical professionals that will help ease your mind. I hope you find the very best therapists that will help your son advance and grow. I hope you find the educators that will understand and work with you in his development. I hope you find the support you need from others that have journeyed down a similar path. But most importantly, I hope you find the peace in knowing that you are in God’s hands and that he has a plan!

    Sincerely, Randy M.

    Liked by 1 person

    1. Randy,

      Thank you so much for sharing your story. Reasons such as this make me happy and feel as if I did the right thing in sharing our story. Otherwise, I wouldn’t be in touch with inspiring families such as yours.

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  22. Hi Kim, my heart goes out to your family. The love you have for your son will help you fight your hardest against this. A friend of mine at work, her son has Duchenne. She is involved in raising money for clinical research, being involved in clinical trials, and has met every doctor on the east coast that is involved in treating this. If your interested, she gave me the names of the doctors that she has been the most happy with. Her son is 9, and she has known about the diagnosis for about 5 years now so she has really done her research of the best possible medical care for her son. Send me your email if you would like me to send you the information.

    Liked by 1 person

  23. Dear Trevor and Kim, My heart goes out to you and your beautiful baby boy Trent. We all take for granted or at least hope that our babies will be healthy and “Never” dream of hearing such devastating news…….Our family knows how hard it is…………. and I want you to know that you do have the inner strength, fortitude and Family it will take to go forward and Live Everyday You have with your son to it’s Fullest. Embrace every smile, encourage every step, hold tight to each other and the days will settle. Love is the answer.

    Liked by 1 person

  24. You are the epitome of POWER, love and strength. You are amazing parents, people, and friends. Trent is a miraculous little boy whose smile can light up a room! You aren’t alone, and we will do whatever it takes to support you through this journey and spread awareness.
    Lots of love & strength ~The Sweeneys

    Liked by 1 person

  25. Reading your story was like going back in time. My son is 18 and was diagnosed when he was 5. We go to AI DuPont in Delaware, but live in PA. If you are on Facebook, there are a few groups for Duchenne. Live each day to the fullest and keep a positive attitude!!

    Debbie

    Liked by 1 person

  26. Our hearts go out to you. Good for you for fighting. We lost our son from “CMD”. He was eighteen, and brilliant. We thought we were lucky because he did not have duchenne. We thought he would live much longer. It turned out that he had a rare form of MD called LMNA, at the time, one of three in the world. Question, question, question, follow your gut. YOU KNOW your son. Don’t accept answers that you do not trust. Bless you in your journey. Always hope for the best. Treat your son as any “normal” son. Prepare him for the future. He will live a longer and happier life if you do. Take one day at a time and treasure every moment. Our thoughts are with you. Feel free to “Google” our son, Thomas Sorensen, Calgary.

    Liked by 1 person

  27. Our family to has been affected by duchennes. My son kenny who is now ten also has duchennes muscular dystrophy. It is a devastating diagnosis and many things are not easy. Kenny is now in a wheelchair for mobility but he is so much more independent with it! Kenny is a good artist and an avid lego builder. He is also part of a webelos scout troop. We help raise money through the muscle walk, go to events supported by the muscular dystrophy association. When he turns six he can go to mda summer camp! We try to be positive here knowing that the cure is around the corner. It is good to have support to talk about your feelings whether they are fears or joys! My son is my joy and cherish the time I have with him! I am a blessed momma! Thank you for sharing!

    Liked by 1 person

  28. Dear Kim,

    In a very similar way, your words were written by me 30 years ago. While reading your thoughts I relived those surreal seconds that you felt as the definitive diagnosed was laid before you. I relived the moment we were told our my son would not live to see his tenth birthday. I relived the moment the mommy in me kicked in and I looked the doctor in the eye and said, “He will live, and he will be happy and strong and successful.”

    My husband and I were devastated like you and Trevor. My son’s diagnosis at 18 months was Marfan syndrome. Marfan is another connective tissue disorder, but that’s not important to you right now and it shouldn’t be. What should be of great importance to you is that you are not alone.

    I know what you’re thinking and doing, and you’re doing everything that’s right for your son. You’re focused on the present and you fear the future, but you are, and must be optimistic. Your son will live. He will be happy and bring happiness to all who know him. He will be strong of character and his character will simply amaze you. He will be successful in all the things he attempts and that too will amaze you. And you and Trevor will be happy and that will blindside you. It’s not that you’ll find happiness for a while, but happiness eventually finds you. I never saw it coming and when it did, I became me again.

    So for now, do everything you can and utilize every resource available to you. At some time or another, you’ll question some of the investigational treatments that become available to Trent, (and they will you know,) but you’ll weigh pros and cons and make the best decisions for him. If you choose to take anything away from my experience, take this… Never, never, question yourselves in hindsight. What you do is right for the time you do it. Decisions made out of love are the best decisions.

    With love and optimism now and always,
    Melanie Moriarty Young

    I owe karmic debts to many people. My mom for more strength than most people are capable of imagining. My dad for demonstrating that good men, and good fathers, exist. My brother for growing up to be as good of a man as our father, and our father’s father. My sister for sticking up for me when we were little. Kat for showing me that the world exists, that I am a part of it, and that my life will be as good as I will it to be. Suzi for getting me to dance, and for reminding me that it doesn’t matter who’s watching.

    Jack Lee Young, February 6, 2009

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  29. Kim,

    I’m sure you don’t remember me. I worked with your mom. My heart is breaking for you. But having read your two posts I have so much hope for all of you. My granddaughter Maddie was born with Down Syndrome actually at Children’s Hospital of Philadelphia. They provided such good care and my daughter and son-in-law embarked on a journey to give her the best life possible. She is 4 years old now and doing much better. We don’t know what the future will hold but for now we have been blessed with having her to love. I wish there was something that I could do. Know that my thoughts and prayers will be with you.

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