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:
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.
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 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.
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.