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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.
Here's Jack! 
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
Nice work, Jamie! Love the new site! Love the header! Love the photo gallery! Love Jack! ❤ Love you guys, Sarah
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.
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
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.
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!
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
Thank you Monika and many kisses for Aidan!
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
Ah thanks for checking in. I hope you and your family had a wonderful holiday and break.
Hello to all!
I love and miss you Jack.
We miss Ryan too! Jack has new friends but definitely nothing like his bestie Ryan!
I just signed your petition Jack. A lot of good folks are here for you man!! Stay warm. Maestro Stephen J Miller. Mount Pleasant Michigan..
Thank you Stephen!
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
Thank you Kerry for following our journey. We are big music lovers, Jack included, he started music therapy at age 2!
xxoo
Please follow Harmony4Hope on Facebook and Twitter and be a part of the “beautiful noise” we are making for children who are impacted by the devastation of a Rare Disease diagnosis. Jack ROCKS! xoxo
Thanks Kerry! And will do!
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
Thank you Cheryl. We are taking all the prayers we can get!
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!
Thanks!
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
Thank you Audra for taking the time to do this, wonderful! Thank you so much!
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
Abigail Alliance for Better Access to Developmental Drugs is with you! We have been working for twelve and a half years to change the system that tragically blocks earlier access to promising lifesaving drugs and therapies. We WILL NOT give up!
http://www.abigail-alliance.org
Thanks Frank!!!!!
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
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
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
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.
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
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
Thank you Gail, it does mean something so thank you.
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.
Thank you Christina. And prayers for your siblings!
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.
Thank you Kathie and sorry for your loss. You know my story tell well.
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
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.
Thank you Jamie. We would love to meet Iverie! I will send you my email and please send me a photo!
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
Hello Cath! Do you have a website or email? I would love to connect. I hope your son receives IT soon!!!
xxoo
Thanks for your reply. Email is: cathdaltonhome@btinternet.com
Clark is currently attending screening tests at Manchester children’s hospital, UK for intracethal treatment, so we should know if he’s elegible next week.
Cath
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.
Thank you Shannon.
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!
jack wishing you very happy new year may god bless you long and healthy life lots of love and good wishes to you
SHIRE: GIVE THIS POOR DYING BOY HIS NEEDED MEDICATION, YOU $ MONEY HUNGRY BASTARDS.!!!!!!!!!
Hi!
I was writing my college apps when I stumbled across your page; I volunteered in the Special Friends room at the Chapel for 5 years, and, out of all the great times, the best was laughing alongside Jack to Toy Story 3. I just wanted to say thank you. You and your family’s positivity and resilience still inspires me, 3 years later, and I know everyone else sees it too. I hope you and your family are doing well:)
God bless,
Josie Liu