Keep Tatum on her Feet!

$24,255 of $33,000 goal

Raised by 171 people in 3 months
This is our beautiful 3rd born daughter, Tatum Reese Reain.    Tatum joined our family on June 1st, 2011 with Pallister-Killian mosiac syndrome (PKS), a very rare genetic syndrome.  She was also born with a brain malformation called Perisylvian Polymicrogyria (PPMG).  Both of these conditions have made it very difficult for Tatum to do absolutely everything.  Over the past 7 years Tatum has accomplished miracles and beat many odds.    Although non-verbal, she is able to communicate her needs, likes, dislikes and express her sense of humour and intelligence using her eyes and a tablet that speaks for her.   Tatum crawls at lightning speed and has mastered walking independently with a walker.  The ability to move her body with intention has brought Tatum so much joy, freedom, independence and confidence.  Tatum's physical movement improves and enriches all aspects of her life including social, emotional, digestive, cognitive and physical aspects among others.  

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 $):

SPML surgery 
-travel to the US - $2466 (2 trips:  1 for surgery, 1 for AFO fitting/Cast removal)
-cost of surgery - $16258
-accommodations/food -  $1,000
-rehabilitation $8000
-Orthotics - $4500

Estimated total cost - $32,224 Cdn

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Bright and early we are our way to New York to have Tatum’s cast removed and new orthotics fitted! She loves flying and scored the window seat AGAIN!
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Two weeks post surgery, Tatum is back to herself in many ways. She rebounded quickly from an emotional perspective and got back to crawling, climbing and getting into everything within a couple of days! It took Tatum until this past Sunday to feel ok about standing again. Yesterday was the first day that Tatum felt comfortable taking a few steps supported by her walker but she improves and strengthens with each step! Recovery has taken longer than we expected because in addition to the proposed SPML surgery, Tatum needed to have a 2mm piece of her ankle tendon removed to relax and straighten her left foot. This required a small incision, cutting of the tendon and sutures.
It will take a bit of time for Tatum to figure out that she can trust the her body post surgery. The changes made to her legs and feet provide new mobility above the ankle and she now has to figure out what to do with it. Continued ABM lessons (therapy), patience, perseverance and loving support will help Tatum get back to walking comfortably and very soon, independently.
Thank you all for your continued support!
With love and gratitude from Tatum and family
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Thanks you to everyone for the get well wishes! We are back in Toronto and Tatum is doing well - the surgery was successful and there were no complications. She’s sore and not able to stand yet but is cruising around on her butt and knees
Tatum’s ABM therapy starts Friday and will continue weekly until her cast is removed, then monthly. We are scheduled to travel to New York in 3 weeks to have Tatum’s cast removed and orthotics fitted.
We promise to keep you posted on Tatum’s progress!
Thanks for cheering on our sweet Tates! We love the love!
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Tomorrow is the big surgery! Tatum and I (Mommy) arrived in Summit New Jersey on Sunday afternoon. We met with Tatum’s orthopedic surgeon, Dr. Nuzzo, this morning and know that we are in very good hands. His waiting room was filled with families from all over the world including places like Romania and Sourh Africa!
Tatum showed us that she is ready for more functional legs and feet last week by walking independently for the FIRST TIME EVER! She’s ready and this surgery will make sure that nothing stops her!
Thank you again to everyone who helped us get here.. We will think of each of you with love and gratitude as we walk with our sweet Tatum in the months and years to come.
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$24,255 of $33,000 goal

Raised by 171 people in 3 months
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