Keep Tatum on her Feet!

$24,555 of $33,000 goal

Raised by 174 people in 5 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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We are so grateful to have so many people caring about Tatum and her recovery… thank you all! Here’s a little update…
Tatum’s surgery happened close to two months ago and she is strong and building her stamina each day. Tatum’s surgery was absolutely a success. Her left foot and ankle are loose and she is clearly experiencing functional improvement and better lower leg to foot alignment post op.
Initially we expected a 4-6 week recovery to get Tatum up and walking better than ever. When the orthopaedic surgeon made the necessary decision to remove a piece of Tatum’s ankle tendon to the surgical plan, her recovery schedule changed, extending it to 4-6 months.
A new discovery came about while Tatum was in surgery; the neurosurgeon and orthopaedic surgeon who operated on Tatum feel strongly that she has a condition known as Tethered Spinal Cord Syndrome (TCS). As per Wikipedia, tethered spinal cord syndrome is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. These attachments cause an abnormal stretching of the spinal cord. Many people who have Pallister-Killian Syndrome have TCS, so it is not unlikely for Tatum. If Tatum has a tethered cord, it is very likely the cause of her foot malformation and it will need to be released through neurosurgery in order for her to truly appreciate the success of her SPML and tendon release surgery. She is on a wait list for an MRI at the Hospital for Sick Kids to confirm our suspicions. Unfortunately the wait list is very long so we are exploring the possibility of heading to Buffalo to have a sedated MRI done sooner. If Tatum does have a tethered cord, any physical growth can cause damage to her nerves so there is some urgency to this.
For those of you who know Tatum, know that SHE is the owner of her agenda and is full of surprises! We put the plans in place and give her the tools to work with but she runs the show and continues to surprise and amaze us!
Thank you all for following Tatum’s journey and being patient and hopeful as she learns to walk with muscles she’s never before used, a new body alignment and a condition that is potentially adding more challenge to the mix.
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Join us at the June 18th documentary screening in Toronto if you can! If you know anyone who lives with challenge or pain, please share this link. Click to find out more but it presents the Anat Baniel Method and the benefits of neuromovement... ABM is the therapy that Tatum has benefitted from for over 5 years and her primary form of therapy post surgery.

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This past Thursday, our community hosted a pub night fundraiser to further contribute to covering Tatum's surgery and therapy costs. This initiative was led by Liz West and Maria Saras-Voutsinas and supported by their band, The Night Owls and another band, Government Rock Picnic. The entire night was a gift full of friends, family and community generosity. The icing on the cake was when Blue Rodeo's Jim Cuddy showed up to sing Try for all of us. Our friend Liz invited Jim to the event because she knows how much both Chris and I LOVE him and Blue Rodeo... and he came and it was just awesome! It was a night to remember to say the least.
Thank you for everyone continuing to support Tatum and our efforts to keep her on her feet. It's been a little over a month since her surgery and although the recovery is taking longer than we'd anticipated, she is getting stronger and improving each day... and she is smiling through it all. Thursday's fundraiser added another $2000+ to the bucket... this will be well used as we increase the frequency of her therapy in the coming weeks.
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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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$24,555 of $33,000 goal

Raised by 174 people in 5 months
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