Welcome to my blog! I'm Ariela

Below is my parent’s story;

For 72 hours we sat silently next to her incubator in the NICU. The room was dimly lit and felt sterile and cold. There was no bed so our only hope was to maybe sleep in the upright chair or doze off between nurses coming and going from the room.  Our daughter was fighting for her life and the next 72 hours would indicate whether or not she had any chance at all. If she could only get through those first hours, everything would be ok.. we believed. This was all unexpected and new. There was no way to speculate all the possibilities of what could happen and no way to predict that this was only the beginning of our struggle for our daughter. It comes back quickly when walking through the doors of any hospital. The constant hum of machines reminds us of the hours and days we sat watching her, hoping not to hear any random, out of sequence beeps that would indicate a change in her breathing pattern or heart rate and signal a succession of nurses and doctors flooding into the room in response. Those were the worst moments, the ones that make you realize that everything you have ever believed about fairness and life, can be gone within seconds.

Ariela Tal came into the world on November 5, 2015. She was born three months premature and delivered by emergency C-section after having undergone several life-threatening and pregnancy related complications. She weighed just over two and a half pounds. Three days after her birth, we were finally able to hold our sweet girl. She was hooked up to and kept alive by an assortment of medical equipment, leads and tubes but nothing had ever felt better than being able to hold her for the first time.

For the next Seventy-five days, we sat in the chair beside her in the NICU, watching her through the glass that separated her from the world. All we could do was be there, watch and pray. She had good days when she made small progressions like growing a few grams or taking in a few milliliters through a feeding tube that went through her nose. Those memories are overshadowed by memories of the days we weren’t sure if she would make it home with us.

We are forever grateful that Ariela did make it home with us. She continued reaching developmental milestones until around the age of eighteen months. We noticed her limited ability to balance, sit upright or stand and she was unable to walk, although quite determined to do so. No one minces words when your child has a health problem. Medical staff don’t give false hope or “break it to you gently.” The doctors were concerned and we knew something wasn’t right.

After several assessments and appointments, Ariela received a diagnosis of Cerebral Palsy and Periventricular Leukomalacia (PVL). As a result, she also lives with chronic muscle spasticity which is uncontrollable spasms of the arms and legs. It creates pain and tightness throughout joints and the entire body. The spasticity and pain increases when Ariela tries to walk/use her muscles.  The pain is all she knows and day after day, she keeps trying to walk, reach, chase and move. She doesn’t understand that her physical limitations will not change. She will not wake up one day and finally be able to move. There is no “catching up.” This is not a skill that will one day develop for her as it stands now.

 Ariela recently turned four. She cannot walk or sit upright. In addition to the pain she experiences, She is now having knee and wrist pain from her daily falls. She will take several steps and continues to try to move her body but eventually, she falls forward onto her knees. Despite the pain, she has not stopped trying to walk and she truly believes that if she continues to try, then she will be able to. You can see it in her eyes EVERY.SINGLE.TIME. SHE.TRIES.

 Unfortunately,  we know this is not the case as the current prognosis for her is not good. She is unable to dress herself, put on her shoes, go to the washroom unassisted or run around and keep up with her sisters. As  hard as this is, the worst thing we have experienced is when Ariela asks us, “why can’t I run, jump or walk?” She has become aware that everyone around her can.

 We have done everything within our realm of possibility to help Ariela get better. Her short life has been consumed with a sequence of doctors and treatments. We have exhausted every possible avenue with the exception of one, Selective Dorsal Rhizotomy (SDR) surgery. Alberta Health care will not cover the expense of surgery or surgery related expenses as it is deemed, “life changing and not life saving. “ It’s true, without the surgery Ariela will continue to live but as time goes on, the pain and spasticity she experiences, will increase. She will loose the small amount of movement she has and as a result will loose the chance to live independently. She will slowly become more isolated from everyday life.  We cannot accept this as her future.

We have made the decision to uproot our family and leave behind and sell everything we have worked for in pursuit of Ariela’s wish to walk. Our biggest challenge now is affording and accessing the surgery, treatment and equipment, she requires.

Traveling out of the country for the surgery and treatment is only the beginning of our journey. Ariela will need to undergo expensive therapies and subsequent painful surgeries. We have a deadline as Ariela’s fifth birthday is fast approaching and the outcome of surgery is completely dependant upon her receiving the surgery before the age and developmental stage of five. We are running out of time and have exhausted our resources by sourcing out and meeting with the surgeon who we hope will perform this life changing surgery for our daughter.

For many years we have chosen to keep private about our struggle. It was too painful and too hard to explain the daily challenges, sadness and guilt we live with. It is hard for us to reach out and be open but we have come to the realization that we cannot get through this alone and we do not have the ability to raise the funds for her medical costs,  without help.

This surgery is our last chance at helping Ariela get her wish. Although you may not know us or Ariela personally, please know that any contribution or amount of support you could give us, will be welcomed with open hearts. Thank you for taking the time to read this and helping us spread the word on making our little girl’s wish come true.

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,

Tomer and Lorena