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Ariela's dream to walk

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ARIELA’S  WISH TO WALK

 
Hi!
I’m Ariela. I just had my fourth birthday. At the age of two, I received a diagnosis of Periventricular Leukomalacia (PVL), Cerebral Palsy.
Because of this, I have not yet been able to walk independently.
I passed the screening and qualify for  Selective Dorsal Rhizotomy (SDR) surgery. This surgery has been performed on many children just like me and has helped to change many lives.
With your help, I hope to raise $130,000 to afford this life-changing surgery. This procedure will be the beginning of my journey to get my wish to walk!

From the News 

Below is my parent’s story:

The room at the Neonatal Intensive Care Unit (NICU) was dimply lit, sterile and cold.  We took turns sleeping upright in the chair, between nurses coming and going from the room.  For 72 hours, we sat silently next to our beautiful newborn daughter while she fought for her life.  We needed her to fight through those first hours, because they would indicate whether she had any chance at life at all.

 On November 5th, 2015, Ariela Tal was born three months premature.  After several life-threatening complications during pregnancy, she was delivered by emergency C-section at just over two and a half pounds.  It wasn’t until three days later that we got to hold Ariela for the first time.

For over two months, we sat by her incubator in the NICU. We watched her through the glass wall that separated her from the world.  All we could do was watch her, pray for her, and silently be there while she made small progressions. We would celebrate a few milliliters of food digested through a nasal feeding tube, or a couple of grams of weight gain.  It’s amazing how those small quantities seemed so big to us.  Since then, we’ve dedicated our lives to giving our daughter a chance for joy, happiness and freedom from the pain that she lives with daily.

 Ariela came home in January 2016.  When she grew to 18 months, we noticed her limited ability to balance, sit upright or stand.  She couldn’t walk, no matter how determined she was.  After several assessments, Ariela was diagnosed with Cerebral Palsy and Periventricular Leukomalcia (PVL).  As a result, she also lives with chronic muscle spasms in her arms and legs.  Pain is all that Ariela knows. Yet, day after day, she keeps trying.  She tries to walk, to reach, to move and to chase her sisters. She is as big of a fighter today as she was back in her glass room at the NICU.

While Alberta Health care was able to help us with Ariela’s birth and follow-up diagnoses, they are unable to provide the surgery that would change the quality of her life.  Selective Dorsal Rhizotomy (SDR) surgery is the chance that Ariela needs to live fully.  Alberta Health care has denied the expense of surgery and it’s related costs because it is deemed, “life changing, not life saving.”  And while it’s true that Ariela will live without the surgery, her pain and spasticity will only increase as she ages.  We cannot accept this as our little girl’s fate.

We have remained private about our struggle up to now.  We’ve never wanted to burden anyone.  However, this surgery is Ariela’s last change to live a full life.  We have made the commitment to uproot our family, leave behind everything we have built and pursue Ariela’s wish of being able to walk.  We are faced with the expenses of her surgery, and will get no help from provincial health care.

 The funds raised here will go to our travels out of the country for the SDR surgery.  This will only be the beginning of Ariela’s journey.  Afterwards, she will undergo extensive therapies and subsequent surgeries.  This surgery is our last chance, and we face a deadline of her 5th birthday.  Ariela is now 4 years old, and developmentally, there is a time limit for the SDR to be effective.  Given the time limit, we need to ask our community for help.  There is just no way that we can do this alone.

 This surgery is our last chance to help Ariela.  Her wish is to walk. Yet, we face the challenge of affording access to the surgery and treatment. A parents’ job is to protect their child, yet we face huge obstacles in that aim. We don’t know how we will achieve this, but when we look into our daughter’s eyes and see her sweet smile radiating through her physical pain, we know that we must find a way.

 Although you may not know Ariela or us personally, please know that anything you could contribute will go towards giving a little girl a second chance at life.  Since her birth, Ariela has been isolated from life experiences due to her physical limitations and pain.  We need to give our daughter over to the capable hands of the SDR surgeon, so that they can give her the chance to live life more fully.  Your gift, no matter the amount, would change her life forever. In the future, every time that she walks, reaches, moves, or chases her sisters, your donation will be living on. Thank you.

 
The Surgical Procedure 

Last July 2019, we traveled to St. Loius and met with Dr. Park of the St. Louis Children’s Hospital. Ariela was assessed and passed the screening for Cerebral Palsy patients, which qualifies her for the operation that we believe will change her life.

 Dr. Park, has helped hundreds of children with Cerebral Palsy. He is the founder who invented a life-changing procedure called Selective Dorsal Rhizotomy (SDR). The surgery pinpoints the damaged nerves by opening a patient's spinal cord. Using electricity, he finds and cuts the nerves that once connected the damaged part of the brain to the spastic muscles, eliminating them completely. Dr. Park has had much success with this surgery, especially when performed on children under the developmental age of 5. 

With your help, we strive for $130,000 CAD to effort the life-changing procedure to fulfill Ariela’s Dream to Walk.  We are well on our way and want to thank all those who have already donated and supported us in raising money for Ariela’s wish to walk. 


My sincerest thank you from the very bottom of our hearts,


You can follow our blog on Ariela.life 

And our Facebook page: facebook 



Organizer

Tomer Berkovich
Organizer
Calgary, AB

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