The symptoms of Tatum's genetic syndrome (PKS) and her brain malformation (PPMG) are essentially that of a brain injury along with hypotonic (floppy) muscles, dysphoric facial features and hearing impairment. Despite her challenges, Tatum's motor skills have progressed consistently until recently. After a couple of big growth spurts Tatum has developed tightness in the tendons of her hips, hamstrings, groin, calves, ankles and feet that have caused her left foot to deform, her right foot to flatten, her gait to be unstable and weak; all of which make it increasingly difficult to walk and hold herself vertical. She is no longer able to walk without wearing shoes or stand and bear weight on both feet with bare feet, a milestone she had reached a couple of years ago. In addition, she is challenged to develop the strength and balance required to transition in and out of standing independently, descend stairs and stand without support. Her body is compensating for what her tendons are doing and it will not be sustainable as she continues to grow.
Thankfully, we have found an incredible solution to keep Tatum moving on her feet; Selective Percutaneous Myofascial Lengthening (SPML). This surgery is not available in Canada. SPML surgery is performed in the United States by Dr. Raymond Nuzzo in New Jersey and unfortunately it has a hefty price-tag that is NOT covered by Canadian healthcare insurance.
We have scheduled Tatum's SPML surgery for April 23, 2019 and need to pay in full two weeks prior! We are gambling that the odds will be with us and we will achieve our fundraising goal in time. We need your help to raise money and spread the word. Please share Tatum's Go Fund Me campaign everywhere you can. If we reach enough people, the odds will be with us! Tatum has beat so many odds already, we are confident we can achieve our goal and help our sweet angel continue to thrive.
SPML surgery with Dr. Jordan's AFOs and continued Anat Baniel NeuroMovement lessons are Tatum's best chance at progressing her gross motor skill development which in turn will improve her progress in all areas. Without SPML surgery, as Tatum continues to grow she will find it increasingly difficult to bear weight on her misshapen foot and will be challenged to find the strength and stability in her hips and knees to progress to independent standing and walking.
For those interested in the details; SPML surgery is used in the treatment of spasticity or tight tendons. The 'P' in SPML stands for "Percutaneous", which means using very small skin incisions (2-3mm) in length, so small that stitches aren't needed. There is NO CUTTING involved in this procedure, instead, Dr Nuzzo uses a needle to poke tiny holes in the fascia, just under the skin where the tight, spastic, or misfiring nerves are. Tatum's SPML procedure will take approximately 2 hours and she will not be fully under anesthetic. The short duration of the surgery and the reduced anaesthetic requirements add to the non-invasive nature of this procedure and hugely minimize the virtually non-existent risks/ Tatum will leave the hospital on the same day as her surgery with walking casts on her little feet and will be encouraged to resume normal activity once the anaesthetic wears off. Tatum will wear her walking casts for four weeks and once they are removed she will wear custom molded Ankle Foot Orthotics until she stops growing. The AFOs will be designed by Dr. Paul Jordan in New York. Dr. Jordon is a paediatric orthopaedic surgeon doing orthotics. He has worked with Dr. Nuzzo for many decades (used to perform SPML as well). Dr. Jordon does extensive assessments, and his AFO'S are more like teaching tools with the idea you won’t need them forever. Building a proper AFO for Tatum post surgery is critical; SPML is essentially a mute point if not followed up with the proper AFO. Click here to find out more about. Dr. Jordan's AFO . Finally, a key component to achieving a successful and lasting outcome from SPML is ensuring that Tatum learns to use, acknowledge and appreciate her new looseness and foot positioning. To facilitate this learning, we will take Tatum for regular intensive ABM NeuroMovement lessons (therapy) in the months following her surgery.
Thank you for your support and caring about Tatum and thank you for sharing our campaign! Tatum has touched the hearts and lives of so many people. If you haven't met her, I hope you do one day. Her authenticity and joy have taught us all so much about living a good life.
... now I hold my breath and hope
Expense Breakdown (Canadian $):
-travel to the US - $2466 (2 trips: 1 for surgery, 1 for AFO fitting/Cast removal)
-cost of surgery - $16258
-accommodations/food - $1,000
-Orthotics - $4500
Estimated total cost - $32,224 Cdn
- Elle Nixon
- Mary Arnold
- Gail Romano
- Pedro Da Silva Neves
- Diana Alli
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