But Grayson is a fighter and his mother said he hasn’t given up and they haven’t either.
- Grayson and his parents before surgery in St. Louis
Grayson was 6-years-old when he and his parents Kendyl and Jennifer Smith stopped in Clarksville for a fun surprise from Bikers Who Care.
Grayson was born with an extremely rare genetic disorder and has now undergone 42 surgeries. Before he had the risky major surgery that would try to correct his severely curved spine that was crushing his internal organs by implanting hardware in his back, he had a wish list that included a ‘bunch of motorcycles.”
On Oct. 16, 2019, as the family drove to St. Louis for a pre-surgery appointment he got that wish and everyone’s hearts melted as he smiled from the loud motorcycle engines revving to his delight. He was able to sit on a shiny red motorcycle with his father’s help and see several motorcycle driving down the road. The family was showered with gifts from Bikers Who Care and embraced by the Clarksville community.
Oct. 16, 2019- Grayson gets his motorcycle wish from Bikers Who Care
Grayson had the major surgery but instead of it correcting his spine, it made it worse and led to complications and more surgeries.
The hardware installed in his back began bending and causing severe pain as it pushed against his skin. Grayson contracted serious infections from the hardware and since has continued to have more complications.
“All of Grayson’s back surgeries failed,” his mom said. “With that, all of Grayson’s bones are very soft and the hardware deteriorated those bones even more … He developed PGK, where the spine falls forward at the top of the neck and the top of the neck became too small to hold the amount of hardware, size and weight so what happened was his neck fell forward from the lack of being braced,” she continued. “As he fell forward the hardware pulled out and was causing severe pain. All the hardware down his back kept coming out so the bone started to deteriorate.”
Grayson was recently admitted into the hospital in Birmingham for pain and continuous vomiting. Due to COVID-19, only his father could go with him into his hospital room.
Beating the Odds
Doctors in St. Louis want to do another surgery, a permanent fixation of Grayson’s neck by placing a rod all the way up his back into his skull. That would paralyze him and take away his quality of life, his mom said.
The hospital in Birmingham said another surgery was not recommended and wanted to focus on Grayson’s quality of life and stabilizing his back more with a brace.
The family will not return to St. Louis for another procedure.
“We are going to respect Grayson’s decision and he no longer wants surgery. We are going to work with our teams in Birmingham. They’ve known Grayson his whole life. They’ve done incredible with him for the 36 successful surgeries that he’s had,” Jenny Smith said. “… Grayson’s always been a fighter. He’s always defied the odds since he was born. He’s never had a chance from birth that he would ever make it this far and he has succeeded all odds. The doctors in Birmingham, have always put so much faith and effort and grace into him. They have grown to love him. They have worked so methodically with him, learned his personality. They are so amazing with him. We are so thankful that they are just godly doctors.”
He was sent home a few days after going into the hospital, but not placed in hospice care. Grayson faces many risks including infection and the hardware coming through his skin and possibly having to undergo another surgery.
However, the doctors and the family haven’t given up on Grayson. He will have a hospital bed delivered to his home and he will be fitted with a brace for his back.
His goal is to go back to school again and be with his friends.
“We want to let him be Grayson and let him enjoy life. Grayson is a fighter and he will let us know if he gets tired or something hurts,” Jenny Smith said. “It’s emotional. It’s hard. The options were not what we expected, but we are going to take it as it comes. We know the good Lord has been watching and holding Grayson for over seven years. We’ve overcome so much and Grayson has defied odds, beyond any child that we know. He’s overcome so much. His doctors are amazed he is handling this so well…. He still smiles, he still plays with his brother and sister. He still has that little attitude. He understands he has great limitations, but it doesn’t stop him.”
Jenny Smith said as long as Grayson keeps fighting, his family and medical team will keep fighting right along with him.
To follow Grayson’s journey or find out how to help the family, visit the Grayson’s Story Facebook page.