Phil’s Friend

Greetings from your RFRD team member in the Mountain Time Zone. I am Justin but better known as Garrett’s dad in many circles, including the RFRD crew. Garrett has the honor of being Phil Maderia’s patient partner this year.   When Phil face-timed Garrett to propose their patient partnership, I asked if I could become part of the team as well and signed up for my first marathon. Garrett (along with his older brother and sister) wanted to support RFRD, so the three of them are all signed up for the Providence kids run next week.

 

Garrett’s birthday is this upcoming Saturday. He will be turning 5. This birthday will be a true celebration as he was diagnosed with Niemann Pick disease after his first birthday.   He was initially thought to have the most severe type or neuronopathic form of Niemann Pick. My wife and I were told he wouldn’t walk or talk and his life expectancy would be 2-3 years.   There were no cures or even treatments available for Niemann Pick disease. Our advice was to take Garrett home and enjoy him.   With heavy hearts, we went home and followed doctor’s orders and enjoyed Garrett.

 

As is the case with many rare diseases, Niemann Pick is a progressive disease. It doesn’t get “better” without an intervention, they only become worse. Garrett had evidence of neurologic and muscular disease at age 1 when he was diagnosed appearing to have the severe neuronopathic type.   Every doctor he saw told us his disease would progress and his physical deterioration was inevitable.

 

Through stubbornness, determination and maybe a little divine intervention, Garrett has defied his genes and gone on to accomplish many things we never believed he could. He has learned to talk and walk (with the help of M&M, Rolo and Hershey Kiss rewards along the way). He has progressed to the point of attending pre school, using the toilet, shooting hoops in our living room, and talking smack with Phil about the Patriots and Broncos (this was before the playoffs last year, but Peyton will be back this year.) Garrett’s toughness and perseverance is unparalleled.

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Garrett has captured the hearts of many in our little community in Wyoming.   When I posted our story and goals on the First Giving page, Garrett’s supporters answered the call and came out in droves. We are humbled and incredibly thankful for all their support for RFRD.

 

Garrett was playing catch with his old brother in our living room last Tuesday (an activity he thoroughly enjoys.) He fell awkwardly and ended up with a spiral fracture of his right femur. Garrett is now in a cast that covers most of his body and not in a state that we’ll be able to make the trip to Providence.   True to form, Garrett is already healing faster than we expected.

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As a family, we wish we could be there to support the RFRD team. We are thankful that such an amazing group of people has come together to support the Rare Disease community and NORD. We wish you all the best and will be cheering loudly from Wyoming.

 

And Phil. What do we say about the man, the myth, the legend? Thank you is just so terribly inadequate for what you do and what you have created and the way you inspire. But I’ll say it anyway. Thank you for letting us into your life and caring about what is happening in ours. Thank you for grinding your way through this winter of all winters to put in the miles. Thank you for wanting to know Garrett. We can’t wait for you two to meet in person. I hope you have enjoyed or can at least tolerate Uptown Funk by Mark Ronson/ and Bruno Mars a.k.a. the “doe doe” song that Garrett chose as your running song. We hope it can pick you up and help you cruise towards the finish line.

 

As for our family, we will celebrate Garrett’s birthday on Saturday, as it deserves a true celebration. Lots of Bronco orange and blue!! On Marathon Sunday, Avery and Grady will run their mile, and I will run my first “unofficial” marathon around hills of Lander, Wyoming.   We will be thinking of our team in Providence and sending you all good vibes. Best of luck to everyone and please cheer extra loud for Phil and Garrett.

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12 comments on “Phil’s Friend
  1. Phil says:

    When I received notice from NORD that Courtney had applied for Garrett to be on the team this year, I made the selfish executive decision to not share him with anyone else but me :-). I often watch the video Courtney shared of Garrett knocking down the jumper at the buzzer in his living room. It brings a smile to my face every time. Thanks for being a wonderful partner Garrett!!! Get well soon and Happy Birthday!!

  2. Peggy DiCapua says:

    beautifully written. Healing wishes to Garrett.

  3. Emma Rooney says:

    Justin there is no such thing as an unofficial marathon–26.2 miles is 26.2 miles (a long way). You have an extra challenge on Sunday running your first marathon without a cheer-leading squad (trust me, it will get hard). Let us know what time you set out and your expected pace so that extra good vibes can be sent in your direction and of course for the whole family as well. You’ll do it!

  4. Erica says:

    Garrett sounds pretty amazing!
    He’ll be in many of our hearts I am,sure as we cheer on Sun!
    Erica
    http://www.rarelydefined.blogspot.com

  5. Anne OConnor-Smith says:

    Justin – remember me from NNPDF family conference? I am so sorry to hear about Garrett! I will be running the Providence full for Garrett too since you can’t make it. Wasserstein & one other doc will be running the half!

  6. Shannon says:

    what a team … Garrett and Phil … It doesn’t get better then that! Feel better soon Garrett and have a very happy 5th birthday!! Safe journey on your run Phil. Your AZ crew will be cheering you on from here. Xoxo shannon (better known as wylder’s mom)

  7. Anne OConnor-Smith says:

    Thinking of this a little late but if you have a running club or active running store in your area & let them know tonight (like maybe on FaceBook) about Justin’s run time & path & reason, I bet people would run parts of it with him & help with drinks & energy gels!

  8. Sandy cowie says:

    Good luck to all the runners. Garret, hopefully had a good birthday on Saturday. Heal quickly.

    • Aunt Pat says:

      Garrart, My LOVE AND PRAYERS GO TO YOU WITH ALL MY HEART AND BELIEVES,YOU ARE SPECIAL AND HEAVENILY FATHER HAS HIS ARMS AROUND YOU AND YOUR FAMILY I KNOW HOPE TO SEE YOU THIS SUMMER LOVE AND MISS YOUR WONDERFUL SMILE, aUNT PAT

  9. Shannon Lucy Batenhorst says:

    Dear Garrett, Shall have to get out my Bronco / Clemson orange today and make a few laps for you… And maybe our pointer pup Hank will put in “a few” miles too as well as Addy Rose. Have your Dad tell you how the Uncle Dogs got their names as you will enjoy the connection. The Rose is for Auntie Clara and her beautiful roses…as Joe said he couldn’t take the Labrador hunting and call out Clara! Sending much care for as sound and speedy recovery as possible.

  10. Shannon Lucy Batenhorst says:

    PS, love the Orange Crush cast wrap!

  11. Elissa Miller-Visoky says:

    Just saw this post. Hope Garrett is feeling better. Happy Birthday Garrett! You are amazing!

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