Confronting Sorrow

20131212-081748.jpgShire Pharmaceuticals has made the decision that Jack will not be granted compassionate usage of their drug. Also, they won’t consider Jack to be eligible for Phase III of the trial. A group of people met and determined my son’s fate. They opted death over life.

“Please recognize that we do not make these decisions lightly.” This decision was not made lightly? So they carefully and seriously opted to allow Jack to suffer and eventually die.

“Data is available for a small number of patients (15)”. Well in the world of rare disease, specifically severe Hunter Syndrome, 15 healthy patients that meet criteria is a whole hell of a lot of patients. And almost 4 years of positive data exists. 4 years in MPS is a lifetime. In the past 4 years, I watched boys lose the ability to walk, talk, play, sing, eat, breath on one’s own, and eventually die. Off hand I can think of 4 boys with severe Hunter Syndrome that were buried before the age of 18 in the past 4 years.

“We remain committed to bringing our potential new treatment to as many Hunter syndrome patients as possible, as quickly as possible.” To as many… – it’s surreal that somebodies have the power to determine who gets treatment and who doesn’t. Jack no, others yes.

Who are these people? Do they have a background or degree in the Arts of Determining One’s Fate? I have no doubt in my mind that if for one second they stepped into my shoes, they would have a different view and change their mind. If it were their son or daughter or grandson or granddaughter dying, I guarantee they would make something happen. They do have the power to offer compassionate usage. And allow Jack a chance to live while ensuring the Phase III trial begins without any negative effects. The answer could have easily and ethically been yes, we will help your son Jack. Shire could have fought for Jack to live.

Lying in bed last night, The Hunger Games popped in my mind. I recalled the reactions to the film, I remember hearing “I’m so happy that it was just a movie. And how disturbing. Or what if this movie was true….” I started to think and feel like our situation is part of a new sequel to The Hunger Games.

My family lives in a community of rare disease, MPS. Then, there is another community, The Capitol, who make decisions for this smaller, complex world. (And I say complex because unless you live in it, you can not understand it.) Anyway, The Capitol, or maybe a pharmaceutical company, decided to tap into this small world for profit. They are entertained by money. There becomes a selection and in our case 15 boys get a chance to live and 1 must die to protect the profit. The world watches 15 boys stabilize and grow in many ways, watching the parents rejoice in hope and sleep without fear. And the world silently watches the one boy slip away from the world, watching his parents in living life engulfed in grief without any hope.

Where am I going with this? It’s so surreal. It’s so disturbing. I wish it wasn’t real. IT IS!

I confront my sorrow. And within the sorrow for Jack lies much more, a deep sadness for our systems that fail. Human beings that are slaves to an industry. Slaves to the government. Those who put aside ethics and do what must be done to create, convince, and sell. And sorrow for human beings choosing or selecting death over giving life.

There is a drug that can save my son’s life. There is a pharmaceutical company that owns that drug. There is a way for this pharmaceutical company to dispense it. There is a physician willing to administer it. There are parents willing to take a risk because they know the other option. There is an opportunity for Shire to show the world that they will do anything to help save lives!

You could save this gentle soul who only wants to be happy and celebrate “birfdays.”

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Why don’t they want to save my little boy’s life?

84 thoughts on “Confronting Sorrow

  1. Pingback: Treatment Denied! | The Isaac Foundation

  2. I’m shocked and devastated at Shire’s decision to deny Jack access to the life-saving drug he needs so desperately. Please know that I’m a passionate supporter of The Isaac Foundation and have participated in successful advocacy campaigns for MPS kids through Andrew’s initiatives. If called upon, I will advocate passionate and relentlessly for Jack. Sending all of you love and HOPE for a reversal of the decision quickly. Please give Jack a hug for me.
    Mimi Hodgkins

  3. I am so incredibly sorry. I can’t begin to imagine the disappointment, anger and frustration you must feel because a company puts their own financial interest above the needs of a precious little boy who has fought so hard and needs their help. Yet they deny him that help. An opportunity to invoke compassion, ethics and common sense gets wasted for corporate greed. I am so sorry. I love you guys and will continue to pray for you as well as pray for the unfortunate souls who sat around a board room table and chose money over a beautiful life. The pictures of Jack brought me to tears. He is a living Angel. Everyone who has had any sort of interaction with him is left a better person because of him. Please let us know what we can do to help.

  4. Don’t give up. You have an army of people who are going to fight for Jack. Hang in there. Sending soooo much love from the Higgy clan up north. oxoxoo

  5. I’m so sorry Jamie (((HUG))). I read the first line of this and just started to bawl. I am so mad and sad for you, Jack and your family. Don’t give up!!! You know that we are all here for you and will do everything that we can to help Jack.

  6. I am Declan’s Aunt…no words….prayers….you have an army behind you…if you need anyone to make calls, send letters anything….we are here

  7. Don’t give up. Love Sarah’s comment. Theme of my day and our life!! I watched Newsies today with my kids, based on a true story (power of the press- watch out Shire!). We will form an army and make change. For Jack and for others. There are times when we get down and think we might lose. But we keep going and then? We get Jack drug. The main character in Newsies is called Jack too. 🙂

  8. Jamie I am at loss for words. I hate what this disease is doing to our children robbing them of their life, and these large pharmaceutical company playing god…. Please let us know what we can do to help , I am sure you know there is lots of people behind you on this.
    With our our love
    Anne and Sebastien

  9. There are no words to express the sorrow we feel in our hearts for your little son and your whole family. This is heartbreaking! My question for those making these decisions is “What if this was your child in need?” Shame on them. All our love and support.
    Larry and Lori

  10. Jamie I am so sickened by this news. I put myself in your shoes and I can’t even begin to think what this would feel like. I want to do whatever we can to fight this decision. My heart aches for you, for all of us. Please tell us what we can do…
    Melissa

  11. I’m so sorry to hear this news. I have been praying for Jack and your family and I’m heartbroken that Jack wasn’t chosen for this drug. Jack’s smile brightens all of us at Fremont on a daily basis. I wish there was something we could do. You are all in my thoughts.

  12. Jamie, You have an army of people behind you supporting you. How can a drug company like Shire deny a child a chance to live a full life. Who gave them that right? I am thinking about you and your family all the time. Give Jack an extra hug for me.
    Heather (Deb’s mom)

  13. I do not have words to express how saddening this new is. Your family has been in my thoughts and prayers in the hopes that Jack would be chosen. I wish there was something we could do. All of my love and support goes out to you and Jack.

  14. Oh Jamie! Sending you blessings and miracles and all the strength you need to plod forward. I am so sorry to hear this news.

  15. Jamie, please let us know if there is anyone that we can direct calls or letters to at shire? We know there are only bumps in your road of determination. Please hug that family for all of us!

  16. Jamie, I’m so incredibly sad to read this news. It seems beyond unfair to me. It is criminal. Prayers will continue. What are the next steps for you? As I read your words, I realized that this could be our future, as Jon and Jason (because of their ages) will probably never qualify to be part of a clinical trial. Compassionate use will be their only option as well…what I want to know is where is the compassion? Sending our love to you guys…and feeling incredibly sad with you… 😥

  17. We are friends of the Scherer family and know of Jack’s journey from Matt, who is my son David’s best friend. He has educated us and asked that we keep him in our prayers, which we have. Now to hear the news that Jack is being denied the medicine that could help him so much, I am at a loss for words. How can person or company have this much power over a child’s life? We will continue to keep Jack and his family in our thoughts and prayers and please let us know if we can help in any way. . Linda, Ryan and David Zabilka

  18. I am so sorry, Life is a gift from God that should never be taken by man. This decision is so unjust and disgraceful for a drug company to make. God bless Jack and his family.

  19. There is a website called change.org, where you can set up a petition and gather 100,000 signatures to present to them to get Jack help. If you set it up, I can post it to every group I know. I hope this suggestion helps.

  20. How sad! Companies only care about one thing and of course that is not human life. Hope and pray the best for Jack! Thinking of you and your family and hoping for a miracle! Best wishes!

  21. I am so, so saddened, by this seemingly inexplicable decision. I will keep faith, as you all have so courageously done time and time again, that this is speed bump and not a final decision. What can we do? What are next steps?

  22. jamie, i am truly sorry and devastated that shire has refused to treat jack. we live in Chicago and have been following jack’s journey with mps only recently as my son who is suspected of having mps awaits tests results to confirm diagnosis. i have been praying for mercy, favor, and wisdom to reach all that are concerned in jack’s well being. it must feel like false hope and fear all at once. i have been looking up to you and your beautiful family for the way you have handled all of this with grace and finding joy in everything that jack does everyday. one thing i have learned from you is that fear is the opposite of faith, i won’t give in and i know you won’t either.

    • Oh Tara I’m heart broken to learn of your waiting, waiting for a diagnosis. Please know we are here for you and your family, whatever you may need! Please don’t hesitate to contact me. I will PM you my cell phone.
      Thanks for reaching out Tara and please know your in our thoughts and prayers!

  23. Oh Jamie, it is through tears that I write this…although Our paths crossed briefly jack and your family had such an impact on me and the entire staff at the preschool. His smile and charm are so heartwarming. I miss his yelling my name everyday. The thought puts a smile on my face. I cannot image the pain and heartache you are experiencing. Please let me know if there is anything I can do,letters to write, petitions to sign.etc. you are an amazing fighter, stay strong! Continued prayers …please tell Jack I say hello and every time I see anything relating to a pirate, I say a quick prayer for him!….love. Rice

    • Ah thanks Cyndi! We miss you very much and the whole team! “RICE!”
      Thanks for much for reaching out, sending prayers, and offering support. We will not give up and please check back regularly we may need everyone’s help!
      Happy holidays!

  24. Dear adorable Jack and family,

    My entire heart goes out to you. My brother, Gregory, died of Hunter’s in 1993, 20 years ago, and all we could do at that time was stand by helplessly and deal with the blows that came one after the other in the last few years of his young life. I am pretty certain my mom’s death 10 years after Gregory’s was partly due to the pain of a mother losing her child in such a heartbreaking way. And if this scenario can be avoided for your family by gaining access to the treatment you speak of then I want to do whatever it takes to help. I am a conscious mom rapper in Vancouver with a strong following and can do a video message to Shire, start a petition, and/or I have a family connection to the Canadian Pharma Association, maybe they can help?

    I was 17 when Greg died at age 15. I know first-hand how it feels to watch a loved one’s zest for life fade away as their skills degrade – walking, talking, moving, playing, interacting. And then the years in and out of the hospital for tests, operations, procedures… watching him hooked-up to wires, getting a trach put in… the time and money and energy spent on this phase of reactive (versus preventative) treatments was exhausting for all of us. It was like watching the lights of his soul slowly dim until he just couldn’t handle the poking and prodding any more and decided it was time to end the suffering and gracefully die in his sleep. I used to wonder if Gregory knew what was happening and was praying the answer was no.

    If there is ANYTHING I can do to help you name it. I have become very close with the Purcell family here in Vancouver after reading about their family in the newspaper, and subsequently met Simon Ibell through them at their annual fundraiser. I would be honoured to write any letters, share your story in the media, social media, whatever I can do. You have a beautiful family and it would be amazing if Jack’s adorable smile could stay a part of your family picture for many years to come.

    Love,
    Monica

    • Hello Monica.
      And thanks for reaching out. So sorry to her of the loss of your brother Gregory. I’m sure he stands proud knowing you were his sister and still making a difference for boys suffering from this horrific disease.
      We won’t give up! Keep checking back, we may need some help real soon.
      Again thanks for your support!

  25. I am so sorry to hear this. My Grandson has a severe case they are saying the worst case of Hunters. Luckily he is getting weekly treatments but we know it is not a cure. Every artery in Tyler’s body is bad. They found it when he had to get his Heart valve replaced. Anyhow I would get the media involved and maybe they can get enough donations and the hospital to help. My mother always told us if there is a will there is a way. Get tough and fight!!!!
    I do not know what state your in but go see your Congressman, Senator, Governor and don’t take No!
    Get tweets out. We will be praying for you all. God Bless!

  26. Oh Jamie, I am so sick about this!!!!!! You have my family’s full support behind you; loud voices from Colorado!! I will keep checking in to see what we can do. Or, email me anytime! sarahbmm@yahoo.com
    Jack deserves better than to be brushed aside! He chose you and Jason to be his amazing parents because of the passion, strength and fight you have in you. Keep fighting!!!!!!!!! Sending lots of love and positive thoughts your way. Xoxo

  27. I can’t believe they will not help Jack. This news is heartbreaking. My thoughts and prayers go out to you and your family. Jack deserves the very best. It brightens my day when I get to see his smile first thing in the morning. I know you will continue to fight. If there is anything we can do, please let me know. We all want to support him in any way possible.

  28. Oh Jamie, I am heartbroken for Jack and you all. If there is anything at all we can do please just say the word! Jack is a gift to us all. He brings sunshine with his smile to all who sees it!

  29. You don’t know me. My son, 2 years old was just diagnosed with MPS/Hunters syndrome and I’m trying to find any bit of information I can when i came across a few articles about your son.

    …. I am at a loss of words for you. I’m sure there are no words that can help… but you’re in my thoughts and prayers… and I am SO so sorry!! 😥

    Your son is beautiful! and his smile looks like one that can light up the room!!

    Sending as much positive energy, thoughts and prayer your was as I possibly can!

    • Hello Lindsay. I am so sorry to read your son was just diagnosed with Hunter Syndrome :C please feel free to contact me and I would love to provide you with resources and support ~ KEY!
      Thanks for reaching out and lets be in touch.

      • That would be great as the internet information we come across can be a bit scary! I know every child goes through this slightly different… but would like to be prepared for the good bad and ugly. Our sons treatments are pending insurance at the moment so as you can tell we’re still in the beginning stages of getting this tackled…

        And and all input/information is more than greatly appreciated!

        How can we get in touch… I would love to talk with you some more if you have the time/energy.

  30. I came to your blog because my boyfriend, Dean, went to high school with you. Our hearts are hurting for you, and we’re saying prayers for Jack. I wonder if you’ve considered starting a petition on Change.org. I’d gladly sign it supporting a call to Shire to reconsider their decision. I’m keeping my eyes on your blog for suggestions on how we can help you.

  31. Hello Representatives of Shire,

    I’m not sure if I’ve emailed the right people in your big company, but I trust that you’ll make sure the message is delivered.

    You’re business is a humanitarian one. Without humans in trouble, there would be nothing for you to do. This makes you, and other pharmaceutical companies, great heaping piles of money (hurray!) but returns to you a certain responsibility. In essence, you need to be humanitarian and help those who can’t access your services and products through the regular channels. It’s your business. You’re profiting from our sickness.

    Now I see here a huge company with the capacity to help one child. And I know you have to account for a lot of children’s needs when running your business. But this child will absolutely die without the special gift that you have the means to provide. I don’t know if anyone in your company has taken extensive first aid training, but when I did mine it was explained to me that once I had the gift to help someone, if I did not, I was then legally liable. I could mess up, but I could not ignore the situation. I’m not sure how this applies to corporate responsibility, but I know how it applies to morality. Denying someone help is wrong beyond a shadow of a doubt, and you are currently being the wrong.

    I’m just one person, and I would give a lot to see this child have a future, a hope in the world for his chance at life. Now, that’s just one person. One voice.

    Certainly Shire, an international company doing business in North America (Europe, South America, Japan…) can come together with enough people, enough support to give Jack the medicine he needs, so that he can simply continue to live.

    With every good wish,

    Brenda Blakely

  32. mummy mary is with you dear jack maa mary is sending endless love prayers blessings with stars to you dear long live jack you are angel star of mummy papa

  33. dear jack maa mary bless you with endless love blessings prayers special blessings with stars to you dear maa mary is always with you long live dear

  34. little angel jack maa mary is sending endless love in stars for you and fairies are coming to bless you dear you are little star love you so much

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