Guestbook

We cherish your messages. Please take a moment to write a note in our guestbook or read entries from other visitors in the comments below.

50 thoughts on “Guestbook

  1. Love Jack’s new blog, beautiful pictures. Thank you for your courage and transparency as you blaze new paths with Jack’s treatment. I learn so much from you as you are a couple years ahead us on the road.
    Lots of love, Sarah & Declan

  2. Love the new site Jamie! Thank you for sharing your heart! I loved hearing your voice today. I will call you soon and in the meantime, lot of love and hugs to you and the family.

  3. I LOVE the website! I just read your post on CB and I totally get it. I love the pictures and it is great for Jack to have his own web site right?! Thaks for the updates and give your brave, strong little man a big hug :),
    Xo
    Liz

  4. Hi Jamie. My thoughts and prayers are always with you, Jack and your whole family. I really like the new website and I love seeing the pictures of Jack! What a super brave boy! He continues to amaze, inspire and touch the hearts of so many, as do you! Please know I am always thinking of you all.

  5. Hello Jamie,
    so glad that you got good news this week.Stay strong in the weeks to come.I hope this is the last and you are starting to see the light at the end of the tunnel. Keep smiling Jack!

  6. Dear Jamie,
    What a super brave little boy you have. Thank you for your blog. I am Aidan Carter’s grandma, Jen’s mom, and know too well what our little guys have to go through, instead of just being able to be kids playing with other kids. You ,like Jen, are brave, courageous, loving and wonderful women. My thoughts are with you.
    Monika Berg
    erg

  7. Hi Jamie and Jack,

    Thinking of both of you as Thanksgiving gets closer. We still miss you at the preschool and think of you often in the duck room. Wishing you a wonderful Thanksgiving. Give Jack a big hug!

    Mindy

  8. Thank you for sharing your story with the world. I believe the power of music unites people and passion for rare disease research and awareness. This belief has prompted me to start my own non-profit foundation. Please join our movement to turn up the volume on rare disease. Where there is music, there is hope! harmony4hope.org

  9. Just saw your story on the news. Little Jack you are in my prayers and I hope that you get the medicine you need soon. God bless you and your family

  10. Jack buddy, you are in my thoughts. Your smile brightened my day when I saw you on the TV. I hope Mom, Dad and yourself are having an awesome time this winter!

  11. Good afternoon,
    I don’t know your family but I have been following your journey in the deep waters of Shire. I wanted to let you know I reached out to Shire’s media department and sent an e-mail to each member. I also sent a letter to the CEO. Below is a copy of the letter I sent. Be well and Godspeed!
    Good afternoon,
    I am writing in response to an article I recently read online. It is the story of Jack Fowler and the fight for his precious life. If your company’s motto truly is:
    “We believe that there’s a better future for the people we help. And for us that means being brave enough to do things differently”, then why on earth is Shire not able to “do things differently”? Your CEO was recently quoted telling the Fowler family, “we are in the business of developing products.” The product you develop is a LIFE SAVING product. Your CEO, Ornskov Flemming was also quoted saying, “Shire doesn’t work with families.” To the contrary!! Your product saves the lives of beloved FAMILY members all over the world!!
    Are you a parent? If so, step into Mrs. Fowler’s shoes and think about what you would want for your child. Can you really go to bed at night knowing your company and your company’s motto is a lie? I do not know the Fowler family however, I am a mother and and I can only imagine the pain, anxiety and desperation they must feel every minute of everyday. This family has done their homework and Jack’s life is hanging in the balance. Shire has nothing to lose and the Fowler has EVERYTHING at stake. The world is full of injustice but it doesn’t have to be, you can change that by helping this family. Be the exception not the rule and PLEASE help this little boy.
    Kind regards,
    Andra Homans

  12. Jason – I just learned about Jack’s story last evening. My heart goes out to you and your wife, Jamie, as you fight to get Jack treatment. I’ll continue to monitor your story and keep you and your family in my thoughts. Best of luck old friend, Joe Tomlinson

  13. loads of love to you little jack guardian angels are with you and your sweet angels mother and father endless love in stars from maa mary and guardian angels in heaven love you dear

  14. loads of love for little angel jack maa mary is with you you are star dear love you so much big hugs and kisses from guardian angels

  15. love you little angel maa mary is always with you you are her star child loads of love in stars and special blessings for you dear i am with you always little brother you are angel star love you so much dear big hugs and kisses from guardian angels

  16. God bless Jack and his family for fighting so hard for him. It must be a frustrating and heartbreaking journey but you do have the love, and support of many. I pray that Shire will have a heart and change its mind.

  17. Dear Jack,

    I am writing you from Germany. My friend Sabine at Care2 contacted me and a lot of friends and we try to help with a petition. My thoughts are with you. You are an angel and my love goes out to you.
    barbara

  18. Hi Jamie and Jason: I live in the Boston area and am listening to your interview on WBZ right now. I’m a mother of two (23 and 26) and my heart is in my throat, hearing about your, and more importantly, Jack’s situation. Wishing you and Jack, all the best, especially in your struggle with Shire. I live in a town adjacent to Lexington, where I believe they’re located. I look forward to following your blog (I just registered my email address). I don’t have any money to make a donation, but send you this message in hopes that knowing so many of us are pulling for you means something and will bring you some encouragement. All the best, Gail

  19. I’m so sorry that you’ve come across this barrier. I just wanted to say that I sympathize with you. My brother and sister were critically ill from when I was a little girl. I was 4 when they were diagnosed. First my brother with lupus. Then my sister was diagnosed with cancer and once they were able to remove the cancer they diagnosed her with lupus. I understand what it’s like to live seeing your loved ones go through procedure after procedure to keep them alive. I’m greatful for the experience I guess you could say. It tought me many things and brought our family closer to God and now as a mother of a 4 year old son I cannot image having to go through it again. Seeing the picture of your son in the hospital made me cry. I really hope that the pharmaceutical company gives you the medicine he needs soon. I wish there were more I could do to help.

  20. My prayers and thoughts are with you. I lost a very special little boy to ” Hurler’s Syndrome” . I’m sure you know this is also MPS but is always fatal. He touched so many lives in his short life. These children all need help donations to be made to the MPS society for research, so hopefully someday they can beat this terrible disease. I hope your boy Jack gets all he needs and is well.

  21. loads of love in stars for you dear from maa mary you are star of mummy papa love you so much you are little star

  22. Hi jamie and jack, mr.fowler,
    My name is jamie and I live in olympia washington. My son is iverie and he will be 5 next month. He has been on ERT for almost 3 years! Iverie is non-verbal (his intelligence to me is immeasurable) so he does not qualify for the life saving IT trial. I feel yr pain and just want to encourage yr power to keep fighting and pray that humanity will pull through and grant the least of decency to a child by granting COMPASSIONATE USAGE OF A LIFE SAVING TREATMENT. I offer my love to all of you. Plese email me if u like. Im in the process of starting a website for iverie, not there yet. He is amazing as is and I hope we can meet someday and he cld play together wth jack.

  23. Hello,
    Just found your website. Our son also has Hunter’s, he is 7 and has the severe form CNS. He has just started weekly IV infusions, we are trying to get him onto the spine/brain type trial too. We’re in the UK. Our thoughts are with you.
    Cath x

  24. I was checking emails and came across your story. Thank you for sharing your sons story. I pray he receives the treatment he needs and soon. Sending prayers from Mi.

  25. I also was checking my email and found Jack’s story. Admittedly I’m only 23 so I have limited life experience but I’m learning every day that the world really is a cruel place… well not the world. People are. And not all of them… but big companies and especially pharmaceuticals are always out to make money. It’s sick and sad. I truly and sincerely hope your son gets the treatment he needs and deserves. He is beautiful and seeing your blog and reading his struggle has humbled me to say the least.

    I’m praying for you, Jack, and your family. I think what you’re doing is great, if they won’t give Jack the drug keep spreading the word about their denial of life saving medicine to a dying child.

    You are a strong woman, keep your head held high. Enjoy every day because none of us are ever promised tomorrow, regardless of our medical diagnoses! And also remember God works in mysterious ways, miracles happen every day. Maybe Jack was sent here to shed light on the evils of pharmaceutical companies.

    Praying for you from Northern Kentucky!

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