Second Opinion for Jake Surgery

Debbie Leeb Roberts Branan is organizing this fundraiser.

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JAKE COULD WALK IF HE HAD SDR
Selective Dorsal Rhyzotomy is a lower spine surgery that has helped thousands and thousands of children and teens around the word with Cerebral Palsy to walk unassisted and live more independent lives. While there are other medical ways to help control spasticity and create less pain, most come with big risks and don't translate to the very real possibility of actually walking unassisted, climbing stairs, playing soccer, whatever he wants to do (sometimes with limits, sometimes not, depending on the level of CP - Jake's is mild diplegic, meaning it affects both legs and torso balance but not much else, so we're lucky).

Now, despite those risks, most of those assistive medicines are "undoable" and he can be taken off or weaned off if they have adverse effects. SDR is NOT. It is a PERMANENT severance of certain roots at the spine which are misfiring, and this misfire creates the lack of ability for his brain and those synapses to communicate the way ours do. By cutting them, the brain rewires, sends the signals to healthy neuropathways, and walking is possible.

So here's what we're doing: Jake had a test to see if he qualified for SDR here in Atlanta at Children's. He had a spinal tap with a substance called Baclofen, which is an antispasmodic, to see if he could still use his walker to walk when his muscles were not so tight (in some cases of CP, the muscle tightness is the only control they have, and if he couldn't do it without the spasticity, he wouldn't be eligible).

He passed with flying colors. Now, this is great news, obviously, but his Neurologiost is a total hold out, and Dad got a little nervous. I respect both those opinions immensely, and it scares me to death to go ahead with it with just one opinion and test (in the small percentage of cases where it doesn't work, we basically would take away any ability he has for leg movement now... this is a big deal). So there is an SDR specialist at St. louis Children's Hospital, Dr. Park, who does about 3000 of these surgeries a year, with a huge, huge success rate. We want to go to St. Louis and see Dr. Park and get a second opinion.

This involves airfare for 3, car rental, hotel, meals, and about 3 days in St. Louis with Dr. Park's team for a full evaluation and review of what was done here in ATL. We are shooting for the Summer when Jake is out of school to go there and run this young man through every test they can think of to make sure, 100%, that he would benefit greatly from going through something like this. It's a long recovery with a lot of physical and occupational thereapy to learn how to use his "new body", but from everything I've seen and heard and asked and researched, when it's successful, it's a complete life changer.

So if you can help get us started on our journey, we would be so incredibly grateful. I can't find words to express not only my fear of going ahead based on one test, but of the independence and freeedom it would mean for my child. THANK YOU!