Hunters Limb Lengthening
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If you haven't met Hunter, you're missing out. He is one of the strongest, and happiest little boys in the world, particularly for what he's been through. Hunter was born with significant skeletal deformities through a genetic mutation. His condition is covered under Pierre-Robin sequence as well as Femoral-Facial Syndrome. This means he has deformities in his face, and in his hips/legs, specifically his femurs. In his short 5 years he has undergone nine surgeries, including 5 on his mouth/jaw, and 2 on his legs. If you're curious to know more details, I've included a longer explanation of what each surgery was and did down lower. Specifically he was born with:
- Recessed Jaw (about 1/3 missing)
- Cleft Soft pallet
- Umbilical and inguinal hernias
- Fluid behind the ears
- Missing left hip socket
- Shortened femurs (about 1/3 to 1/2 missing)
- No patella or "Knee cap"
- Missing right side ACL
After all he was born with and what he has been through, we are now mostly left with getting his legs where they need to be. That means he needs to have a limb lengthening surgery on his left leg, which is 2.5 inches shorter than his right leg. His surgeons, Dr. Dror Paley and Dr. Claire Shannon, are based in Florida, while we live in Idaho.
That brings us to this GoFundMe. In order for this surgery to be successful we will need to be in Florida for 12 weeks. That is a significant time investment, but one that will be well worth it. All in all, surgeries, lodging, physical therapy, and everything else that comes along with being away from home for three months will cost somewhere between $35,000-$50,000 out of our pocket. The reason for this is specifically the Physical Therapy cost, as well as our plans limitations on coverage. The PT visits alone are expected to cost between $200 and $300, 5 days per week. Then come weekly x-rays, evaluations, and visits, most of which will exceed the allowed amount by our health care provider. This is all before we get to the out of pocket costs for the surgeries themselves.
Thankfully both of our primary jobs allow us to work remotely, but this is still an extreme cost. We are asking for whatever help you can give as we approach his surgery date of 01/16/2023 to help us scrimp, save, and raise as much as we can between now and then. We are so grateful for the support we have gotten for Hunter so far in his life, and appreciate any/all the help you can give now to help us mitigate the bluntness of tens of thousands of dollars in medical bills.
Thank you and God Bless
Hunters Surgeries to date:
- Hardware placed into his jaw for a "Mandibular Distraction" at 1-2 months old. The severed the jaw bone, placed a rod and several screws in so that they could manually lengthen his jaw, and the body would fill in the small gap created with bone.
- Hardware out for the prior procedure
- A second mandibular distraction was needed as the first did not extend enough, as well as it made his jaw slightly crooked. He was also in a medically induced coma for several days following this surgery to allow for healing.
- Hardware out for the prior procedure
- Repair of his cleft soft pallet, paired with fixing his "tongue tie" and ear tube placement
- Hernia repair and testicular distension
- Right side hip reconstruction, paired with ACL reconstruction, and right femur straightening.
- Removal of some hardware for the prior procedure
- Second ear tube placement
Known upcoming surgeries
- Limb lengthening of his left femur, possible hip reconstruction as there is no left hip socket. They will know more when they get in and can see better pictures of the anatomy
- Second surgery to remove the limb lengthening hardware
- A second limb lengthening in his teenage years as he will gain more of his natural height
- Second surgery to remove the limb lengthening hardware
- **Possible hip replacement depending on what they are able to do for his left hip during the upcoming limb lengthening
Organizer
Joshua Ramsdell
Organizer
Idaho Falls, ID