Leo's SDR and PT fund

Hi, family and friends. We are writing to you to let you know about a significant event in our lives and to ask for your help once again. Some of you may already know that Leo is having surgery tomorrow, December 14, at St. Louis Children's Hospital to alleviate the spasticity in the lower part of his body. The surgeon, Dr. Park, has done over 3,000 of these selective dorsal rhizotomy surgeries to help young children with Leo's type of cerebral palsy and has a remarkable success rate that's unparalleled by any other hospital in the country. For more info on the SDR surgery, click here .

It's not a miracle cure but it's critically important to Leo's future. We've spent several years researching this surgery and exploring various alternatives in the meantime. Although the brain damage caused at birth cannot be reversed, this surgery will relieve the constant pull on Leo's hip, leg, and foot muscles that constantly interferes with their correct function and has markedly distorted his right foot. Despite various treatments such as a muscle relaxant medication, day and night braces, and serial casting, his foot position continues to worsen dramatically so he now walks on the side of his foot which causes him to fall often as he plays in our backyard and on the school playground, and wreaks havoc on his musculoskeletal system.

He's growing up quickly to be tall like Eric, and this surgery is most successful with young bodies that are still developing so it's crucial to have it done soon. The immediate benefits of the operation and following physical therapy should be a much better foot position, improved balance and posture, and relief from the constant tightness in his lower body, all of which should really help his gait. But our main motivation for having this surgery is really for Leo's future: without it, he'll likely be unable to walk by adolescence or young adulthood and will suffer from arthritis as he gets older because of the stress on his joints from incorrect use. If he has the surgery, he should be able to walk all of his life with just a cane.

The operation involves making an incision in Leo's back to access his spinal cord and then electrically stimulating each nerve rootlet one at a time to identify which are misfiring due to the CP so they can be surgically eliminated. Leo will spend six days in the hospital recovering and having intensive physical therapy 5 days a week for a year after he comes home as he learns to walk again with a neurologically different body.

We fought long and hard with insurance for out of network coverage and finally were approved on our third appeal. However, we will reach our high insurance deductible for both this calendar year and next, and still have outstanding costs such as transportation, many physical therapy sessions way beyond the limit of our plan,  a follow up visit at 4 months and 1 year, and a very likely secondary orthopedic surgery later this winter. 

Many of you were incredibly generous in contributing to Leo's participation in Ability Camp several years ago where he finally triumphed in learning to walk. In the years since then, thanks in large part to you, he's explored the world on his own two feet and flourished with his characteristic wide smile. He's now in first grade and loves math and sports like bike riding and skiing which he's able to do with adaptive equipment. We hope that he'll always be able to embrace life to the best of his ability.

Many of you have asked us how you can help.  While certainly not as daunting as it would have been if insurance had not approved covereage, it is going to impact our family in a big way financially so we are reaching out to you to give whatever amount you feel most comfortable with. We appreciate more than you can ever know what this means to Leo's future.

For the purposes of removing a withdrawl hold on this campaign, GoFundMe requires that we explicitly state the follwing to Leo's supporters:

1. We are Eric Senecal and Jessica Pulver of Gorham, ME.
2. We are Leo's parents.
3. All funds raised by this campaign will be spent on costs related to SDR surgery, rehabilitation, physical therapy related to the SDR surgery intended to build new muscle strength and coordination, follow-up tendon lengthening surgery, travel related to out of network surgery, assistive devices like braces and rehab equipment for leo (like a treadmill).
4. We (Eric and Jess) will be managing these funds directly for the abover purposes from a dedicated account.

Donations

  • Scott Challener 
    • $50 
    • 28 mos
  • Anonymous 
    • $50 
    • 30 mos
  • David and MaryLou DeStefano 
    • $150 (Offline)
    • 31 mos
  • Heidi Drexel 
    • $30 
    • 31 mos
  • Anonymous 
    • $500 
    • 31 mos
See all

Organizer

Eric Senecal 
Organizer
Gorham, ME
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