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Keep Tatum on her Feet!

$23,135 of $43,000 goal

Raised by 156 people in 1 month
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.   

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.. now I hold my breath and hope  

Expense Breakdown:


SPML surgery 
-travel to the US $1800US (2 trips:  1 with Tatum, Mom and Dad for surgery, 1 with Tatum and Mom for AFO fitting/Cast removal)
-cost of surgery $23,090US 
-accommodations $1,500US
-rehabilitation $5000US
-AFOs $1000US

Estimated total cost $32,390US = approximately $42,500CDN

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Time is flying and although we have achieved more than 50% of our goal, we only have 3 weeks left to raise the remaining $10,000 needed to pay for the surgery itself - WE CAN DO IT! Thank you so much to everyone for all of the love and support. Please help us keep the momentum going and keep sharing, caring and donating it you can! Donations can also be sent by e-transfer to kimberly.reain@gmail.com.
Attached is a video of Tatum in the pool at Beverley school this past Friday. It's so incredible to watch how she is able to walk independently in water. The water surrounding her makes all of her movements easier. We can imagine this ease out of the pool one day very soon! The thing we love most about this video is Tatum's confidence, she doesn't need (or want) any help getting around in the pool... she's got this!
Thank you for following our story, caring, sharing and donating! We are so grateful!!
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We have reached 50% of our fundraising goal! Wow! Thank you!!!
So far, our fundraising has allowed us to pay our surgical deposit, reserve our hotel room, book our flights and schedule two full weeks of therapy before Tatum's surgery. The balance of the procedure (approximately $29k) is due on April 8, 2019. Please keep spreading the word and donate if it moves you to do so! We are so grateful for all of the support, love, sharing and donations.
Attached is a video showing what we do to straighten Tatum's left foot each day... we are so hopeful that the surgery will ease the tension in Tatum's sweet little feet and legs.
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Thank you to everyone supporting us on our journey with Tatum! Your generosity is blowing our minds! We have achieved 40% of our fundraising goal so far and have raised close to $20,000 - WOW!! We have 4 more weeks to raise the balance of our funds so please keep sharing our campaign… we will get there!
We first reached out for help supporting Tatum several years ago. We needed actual physical humans to help us facilitate an in home therapy program focused on remapping Tatum’s brain . Chris and I had not been raised to ask for help so it felt difficult and pretty shameful to do so. I remember the moment I sent that first email asking people to volunteer their time to help Tatum… I clicked send, held my breath and thought I might throw up. The thoughts I had swirling in my head were full of self-judgment and unworthiness. To our astonishment, within two hours of clicking ‘send’, our volunteer schedule was filled for the entire month. We ended up having 40 volunteers who lovingly visited our house for close to two years to help Tatum learn to crawl, read and stand. Through Tatum’s challenges we have learned that it is not shameful to ask for help, we all need it at some point in our lives in varying degrees. We’ve learned that helping one another builds community. We could not have done all that we have for Tatum without our family, friends and broader community. It really does take a village to raise our children and we are so grateful for ours! Thank you all.
This past week, we had a new group of people join our village of Tatum supporters. Our dear friend, Victoria Turner, shared Tatum’s fundraising campaign with her Dad, Ted Horton. Ted then shared it with an organization that he and Hanne Howard founded in Kenya. That’s right… KENYA!
Ted and Hanne’s organization is called the Hanne Howard Fund or HHF ( http://hannehowardfund.org/) and it is a registered charity that works with vulnerable children in Kenya to help transform their lives and teach the children self-reliance through education, compassionate care and skills training. The kids that are part of HHF live and grow in a culture that embraces community and kindness.
The primary students at HHF read about Tatum, her challenges and her need for surgery and decided that they wanted to do what they could to contribute so they organized a fundraiser for Tatum! These beautiful children put on a talent show and presented song, dance and art. In addition, the kids gave up their evening fruit for a week so that money would go to Tatum. A few children were also able to fundraise at home. Together, this community of children raised a total of $110 for Tatum.
To everyone at HHF, thank you for caring so much about Tatum and thank you for being part of our village. We are full of love and gratitude. You have so much to teach us about community, caring, sharing and making a difference. Please take a minute to watch the video of the HHF kids performing at Tatum’s fundraiser in Kenya.
If you’d like to learn more about the Hanne Howard Fund, please visit their website at http://hannehowardfund.org/. HHF is currently looking to raise $1,000 for musical instruments and art materials for the upcoming April holiday extra curricular program. They hope to locally purchase a guitar, keyboard, flutes, acrylic paints, brushes, stickers, glitters, glue etc. I share this with you in case a cause like HHF resonates with you. The generosity of our new young friends from Kenya will surely come back to them. If you are interested in donating to HHF, you can do so through the above link. They provide tax receipts and you can leave a note in the comments section about how you heard about HHF and what you’d like your money to go towards.
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We received Tatum’s first diagnosis when she was just over a year old. We were told that part of Tatum’s brain was not functional; that her cortex just didn’t form the way it was intended to. This condition is called polymicrogyria and is most prominent in the area of her brain that controls language and mobility. As we sat with the neurologist at Hospital for Sick Children in Toronto reviewing Tatum’s MRI results, I remember feeling so overwhelmed but also a bit relieved. Tatum’s challenges were not degenerative and she was otherwise healthy… we could work with this. As we digested what this could mean for Tatum and our family, we were drawn to research about neuroplasticity. Neuroplasticity is the ability of the brain to form and reorganize synaptic connections, especially in response to learning or experience. Knowing that we could help Tatum map new neural pathways inspired our family to figure out how. Almost every form of therapy and treatment we have exposed Tatum to over the past 7 years has been focused on the possibility of neuroplasticity. Knowing that the speech and mobility areas of Tatum’s brain are essentially useless and witnessing Tatum learn to crawl, climb stairs, get herself on and off furniture, walk with assistance and communicate with meaning using her ‘talker’; we have proof that Tatum is mapping new neural pathways every day.
For the past 4 years, Tatum has been participating in monthly Anat Baniel Method NeuroMovement lessons. These lessons are focused on mapping new neural pathways and are based on the concept that movement is the language of the brain: movement provides information to the brain for it to develop new neural pathways and to organize itself, and in turn, the brain organizes all movement - not only the physical movement of the body in space (the movement of the skeleton and muscles), but also the movement of thought and emotion. By shifting the focus from the ‘problem areas’ to the brain, we are able to tap into the remarkable potential of the brain for healing, rehabilitation and development. With the Anat Baniel Method (ABM), instead of being limited by muscle and performance, Tatum is freed up to use the growth potential of her unlimited brain as the tool for her body and mind’s healing, rehabilitation, and development. It is remarkable to witness Tatum’s development after each series of ABM lessons. Without fail, she learns new skills, moves with greater coordination and ease, presents herself with increased awareness and is more confident socially. Her nervous system is so obviously calmed as we observe a decrease in her frustration levels, improved sleep habits and decreased stimulation seeking behaviours.
We love ABM lessons for Tatum because they provide incredible results. In addition, Tatum truly loves her ABM lessons with Judith Dack and Judy Cheng in Toronto! She plays, laughs and smiles through her lessons and occasionally is relaxed enough that she sleeps through them. ABM lessons teach Tatum (her brain) that movement is fun and easy, making it far more likely that she will try what she learns on her own.
Intensive ABM lessons post SPML surgery will provide Tatum’s brain with new information on how to use her body effectively after the surgery, appreciating the physical changes that have been made while maximizing the potential for her development.
Thank you again for sharing and caring! Please help us keep Tatum’s Go Fund Me campaign momentum going by donating if it moves you to do so and/or reposting our page on your social media feeds. We have 7 weeks to go and we have achieved almost 25% of your goal.
Thank you to our community of friends and family for supporting us on this journey with Tatum.
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$23,135 of $43,000 goal

Raised by 156 people in 1 month
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