Our sweet 6-year-old adopted son Kameron Birky had an intracranial hemorrhage (brain bleed) when he was born 2 months early, causing him to have cerebral palsy.
(This picture is the day we got him, at 7 weeks old, having spent 6 weeks in the NICU.)The long-term effects for him have primarily been poor vision (he wears glasses which help somewhat), and poor mobility/dexterity. He has had various therapies, botox injections in his legs (to relax the tight muscles), and braces over the past few years to help him walk. He has to be supported to stand, and can shuffle along somewhat with his walker, but his feet are turned in from spasticity in his legs, and it takes great effort for him to move much.
These photos were taken in 2014, and even with braces on, you can see how badly his feet turn in from the spasticity. Kameron's walking ability is getting worse as he grows, in spite of our best efforts.
We believe the best option to help Kameron is a very specialized and delicate selective dorsal rhizotomy (SDR) surgery which separates out the tiny nerve rootlets at the base of the spinal cord, snipping the ones causing spasticity of his legs, without cutting the motor ones needed for walking! Many children who couldn't walk at all before can walk with a walker after the surgery, and those using a walker before can often walk without it after the surgery! This surgery is primarily done at St. Louis Children's Hospital especially for children like Kameron, by Dr. Park, who has been working in neurosurgery for over 30 years. They have performed well over 2000 of the dorsal rhizotomies there on children from around the USA and around the world, having a program set up just for that procedure. Though a few other places do rhizotomies, none have nearly as much experience as Dr. Park and the St. Louis Children's Hospital who do it daily, not just occasionally, and have specialized their technique with excellent results, relieving the spasticity in virtually all of their patients! Following the procedure, Kameron will have intensive therapy in our hometown, multiple times a week for months to follow, which should enable him to walk better, hopefully even without a walker eventually.
If you would like more detailed information, see: St. Louis Hospital SDR Info , SDR Brochure , and Dr. Park's information . Here is a 16-minute video from the hospital describing the surgery and therapy involved, and a quick youtube search of "selective dorsal rhizotomy" shows numerous children who have been helped to walk by the procedure:
Dr. Park evaluated Kameron in St. Louis on March 2, 2015, and said he definitely would benefit from the surgery, and needs it as soon as possible for maximum benefit, as he only has up to about 4 more years of walking development left. Here is a picture of Kameron with Dr. Park during that evaluation, with basically a "club foot" condition of his feet from the spasticity, as Dr. Park stated.
Without going into all the detailed explanation about it, we, Kameron's local primary care and neurology doctors, and the St. Louis Children's Hospital have tried for months to get his insurance to cover the surgery there, but they won't because it is out of network, etc...
Therefore, we will have to pay the discounted out-of-pocket rate of $33,545 which will cover the pre-surgery evaluation, surgery and hospital fees, surgeon cost, and follow up evaluation 4 months later. This amount must be paid in full 30 days prior to the surgery, which is scheduled for April 23, 2015! Several people have asked how they may help with expenses for this procedure, so we set up this web page to make it easy to donate and easy for us to share Kameron's progress leading up to and following the surgery!
Thanks to all the generous donations, in 3 weeks time, the need of $33,545 was met for the SDR surgery, and a second surgical need has also been met far earlier than we had ever hoped! The selective dorsal rhizotomy (SDR) surgery will resolve the root of Kameron’s problem, permanently relieving the spasticity in his legs and ankles, and allowing the muscles to relax from always pulling them inward. However, because of years with the spasticity, his tendons, ligaments, etc. are already pulled into a club foot position. Frequently, following the SDR surgery, patients need their Achilles and/or hamstring tendons lengthened in a separate procedure to allow their legs and ankles to straighten. Dr. Dobbs, who works at the same St. Louis Children’s Hospital, does a specialized, minimally invasive, percutaneous tendon-lengthening procedure involving “feathering” the tendon rather than one that most places use with a larger incision and cutting/splicing the tendon. Here are links for more information on the Achilles Tendon Lengthening Surgery.
Tendon Lengthening Surgery Link
Tendon Lengthening Surgery Brochure
We have been told that it currently appears the hamstrings are ok, otherwise the cost would be about $3000 more than currently quoted. Again, the insurance won’t cover this minimally invasive surgery in St. Louis due to being out of network, etc., so the total reduced out-of-pocket cost for Achilles tendon lengthening, including surgeon fee, anesthesia, surgery, and hospital stay overnight is $9,431. This, added to the other surgery cost of $33,545, brings us to our new goal of $42,976. This official goal has been reached, Praise the Lord! There are also additional costs including transportation costs, multiple nights of lodging around the surgeries, meals, money transfer fees, website fees, and other miscellaneous costs, bringing the total actual need to over $46,000. (Kameron will be in the hospital an anticipated 5 days after the first surgery and one day after the second surgery, thus accommodations are needed in St. Louis.)
Dr. Park told us the basics about the tendon lengthening surgery need at our last appointment, though we thought it may have to wait a while for funding after the SDR surgery. We have more recently found out the details about it, and that surgery has now been tentatively scheduled for June 11, 2015! Praise the Lord! In the days following the April 23rd SDR surgery, Dr. Dobbs will evaluate Kameron at the hospital, and we will formally confirm the need and date for the tendon lengthening surgery. Any funds that may come in beyond the overall surgical expenses of at least $46,000 will go toward any of Kameron’s future ongoing medical costs such as equipment or therapy not covered by insurance, or toward meeting insurance deductible and co-pay needs when it does cover costs. He will be having therapy 4-5 times per week the first 6 months after the surgeries, likely decreasing about a day per week every 6 months thereafter.
Praise the Lord for working through each of you to provide the needed funds, and thank you for your prayers and generosity! God bless each one of you for your kindness in giving. Please continue to pray for us as Kameron has both surgeries with intensive therapy after both. Pray that he will be healthy for the surgeries and that his body will respond well to them. We will keep this website updated on how everything goes!
(If anyone has donated offline, I have posted their donation on the website as part of the total amount given. If you want your name with the donation to be public so you and others can see it, rather than anonymous, as I have been doing unless told otherwise, please let me know, and I’ll change it.)
Thank you and God bless you all for your prayers and generous giving!
Here is our family:
Here is a picture of one of Kameron's favorite activities, greeting people in the foyer at our church. He loves people and knows no strangers, calling out greetings to everyone, whether at church or in the middle of the grocery store!
We anticipate God helping Kameron to walk, possibly without a walker, through this surgery, and we are trusting that He will do great things in Kameron's life!
Please pray for Kameron's surgery and therapy as he works toward a more mobile and independent future!
Update video 10-22-15: Kameron walking around the farm with his homemade lawn walker.
Kameron is continuing to progress and get stronger. Keep posted for updates!
Kameron will be having another follow-up appointment with Dr. Park, Dr. Dobbs, and therapy at St. Louis Children's Hospital on Monday, April 18, 2016. If everything appears as expected, he will be having a Hamstring Tendon Lengthening surgery on Tuesday, April 19 with Dr. Dobbs. This short outpatient surgery will help his legs to straighten up better so he can stand and walk tall more easily, as his legs remain fairly flexed when walking currently. Hopefully, it should also help with straightening his feet a bit more too. He will not need casts afterward, and should just be in the hospital overnight for observation. Insurance should be covering the majority of the medical expenses for this surgery, so we are asking for your prayers that Kameron will remain healthy, and have a smooth surgery, recovery, and good results from it.
Please see the following links for more details about the surgery:
Keep posted for updates!
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