Summer Time

Howdy & Happy Summer!

The Fowlers kicked off summer with a wonderful beach vacation close to home.  Staying close to home is becoming a necessity with Jack’s care.  Not to mention we no longer travel light!  stuffedinvan

This was our first family plus another family vacation.  It was beyond special for us, and hopefully an annual trip.  Juliet was entertained with playmates and Jack was constantly showered with love.  The Kretz family hold a very special place in our hearts,  they showed up and stepped up… asked hard questions, helped with Jack’s care, spent quality time with him and loved him to pieces.  He felt it all!   As Jack becomes more “distant” it’s very challenging to watch friends and family members not know what to do or say, so they often opt to take the backseat. Which is fine and we hold no judgement but when you find those front seat riders wow it’s a game changer!  We heard little and big voices say things like “I love Jack!” “He is so tough and amazing!” And “I want to sleep with Jack!” And “I want to snuggle Jack!” Or “Does Jack like Jake and the Pirates?”  And I was able to watch two young, inquisitive kids help GTUBE med Jack, now that was incredible.  All of it was amazing and we won’t ever forget this time together!  A couple of pics…

More news…as July approaches one thing comes to mind to many Iowa (or Midwest) folks, RAGBRAI!  RAGBRAI is a non-competitive bike ride across the entire state of Iowa, over 7 days, averaging a total of 500 miles!  This year my fellow Denverites have stepped up and showed up to support Jack with #TeamJack.  Thank you guys, you all are amazing for sacrificing time away from your families and also to physically challenging yourself for great casue.  #TeamJack!  To have friends afar that continue to still organize and execute ways to fundraise for kids suffering with Hunter Syndrome and to help Jack, so beautiful! I I need you all to help motivate these bikers, I have a simple request, could you please consider a small donation to sponsor these incredibly unselfish peeps or riders?  Maybe thats $10 total, or maybe that looks like $10 a day, whatever fits your giving, it all works!  It all works because it will benefit research to save kids or to help our family with Jack’s care. Here is what you can do…

You can donate to Help Extinguish Hunter Syndrome, which continues to support research for gene therapy that is progressing to human trial in 2017.  Kids just being diagnosed with the disease have HOPE for a future free of disease!

Help Extinguish Hunter Syndrome

Or to impact Jack directly please donate right here on his webpage. Donate Here   All this money will go towards the necessary changes needed to help keep Jack comfortable and functioning in our home, he no longer can walk or sit independently.  We are currently needing to modify our home with ramps, a stairlift system and more adaptive equipment.  On top of purchasing a wheelchair van.  Everything in our world is expensive and often not covered by insurance.

I know we are all busy and forgetful, or at least I am, but your support is needed.  Boys with Hunter Syndrome need us!   Anything helps my friends, even a simple share of this link, so please consider helping us out!    

Much love and HOPE!

Jamie and Fam

sunset

 

 

7 thoughts on “Summer Time

  1. So happy to see an update!! Praying for you guys everyday. Please tell Jack that Isaiah misses him and says hi.

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