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Cards for Tyler

Hey there, Grant here! I received this email (below) and wanted to share it (with permission). Tyler’s story really got to me, as I think it will you. As you are sending out your Christmas cards, add one more to your list, please. All little Tyler is asking for is for you to reach out, spread the love and Christmas cheer by sending him cards, letters, or any get well wishes!

THE ADDRESS IS:

Box 581409

4774 San Remo Rd.

Kissimmee FL, 34758

 

When my son Tyler was 6 months old he was diagnosed with Congential Psedo Arthrosis of the left tibia, with Neurofibromatosis.

http://www.paleyinstitute.org/orthopedic-conditions/congenital-pseudarthrosis-of-the-tibia/cpt-overview

http://www.mayoclinic.org/diseases-conditions/neurofibromatosis/home/ovc-20167893

When he was learning to stand and pull up on furniture he broke his leg. His leg couldn’t hold his body weight. He was put in a hard cast for 6 weeks, but it didn’t heal. He then has surgery to place a rod on his leg, along with an outer fixator brace which he had on for 6 months. But a few months after the initial surgery the rod started to come out through his heel. He had surgery again to replace it. When the fixator brace was taken off he was given and AFO brace to help support his leg. But it wasn’t helping. He was going on 3 and still wasn’t able to walk. Then they thought another brace would help and was given a KAFO brace that gave extra support at the knee. Within a few weeks of physical therapy he was walking!!! Things have been going great. His therapist felt he was doing well enough that she said he didn’t need anymore. But recently he started to complain of pain. With everything that had happened to his leg, and the lack of use, his leg is a few inches shorter then the right, and his foot is a few sizes smaller than the other. We took him in to see why his leg was hurting, and unfortunately the damage has gotten to bad, he needs to have his foot amputated. His surgery is scheduled for ‚Ä™dec 5. So at this time we are just asking for prayers, prayers and more prayers. I’m also hoping you will share his story to raise awareness about NF and PSA. They are common but rare at the same time so they are a ” forgotten” disease basically. Tyler also loves getting mail. We are trying to collect cards to give to him while he is home recovering, to help keep his spirits up while he adjusts to this life altering event. So please consider sharing his story. He’s such a tough kid and the sweetest little boy ever.

I also have a Facebook page for him for people to follow his story.
http://m.me/tylerwithnf1

My main goal is to get my sons struggle and story out there to raise awareness about these forgotten diseases that so many people suffer from.

Thank you for your time.
Merry Christmas and happy holidays.

Audrina Heffner

Paley Institute | Congenital Pseudarthrosis of the Tibia | Overview | Paley

Congenital pseudarthrosis of the tibia (CPT) refers to nonunion of a tibial fracture that develops spontaneously or after a minor trauma.

paleyinstitute.org

 

 

6 thoughts on “Cards for Tyler

  • Wow thanks Grant for sharing. I will definitely be praying and I will definitely see what my hands and I can come up with to send to Tyler this Christmas. It sounds to me like he also needs a little miracle. I hope you get better soon tyler.

  • Hey Grant it is me samantha, I want to dedicate a song to little Tyler I emailed you The dedication a few minutes ago. I would like to dedicate and send this out to him as a Christmas gift from me to Tyler tonight. I was touched by his story my Grandma had an issue where one leg was shorter then the other one when she was a kid and her mom told her to walk on it. It does sadden me to hear of a little boy who can not walk. I just want to send Angela we have heard on High to him as a gift from me to him tonight. If you can I am commenting from Polk county and my hometown country station is the one the only 97.5 wpcv.

  • Good morning Grant I love listen to you every night when am working. I was very tough about Tyler story. Am praying for him and is family. I sent him card. May God bless and protect you and family.. Keep up the good work. From your African brother.

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