Chaya Ayala (Liel) 3 year update
Dear Family and Friends,
I'm sure this last year has been one of the most disappointing and difficult one for all of us. I certainly do not intend to make light of it as we have all had to endure extra difficulties and adversities this year.
Chaya Ayala has had a most difficult time this past year. As you know, she has been in a specialty care facility during the entire last year, which has been a blessing and curse for all of us. We were fortunate due to the covid circumstances that she was able to be safe and looked after outside of the home; because chances are she could not have been properly taken care of this year with all the additional measures we would have had to take at home to do so.
Unfortunately this came with many pitfalls as well. First we barely got to see her in person, and only a few times at the end of 2020 due to the lockdowns. Any child in a facility will not be taken care of as well as they will at home, and for her this was certainly the case. She has lost weight, is more rigid and her extremities are far more difficult to move now. Some of these just tend to happen naturally over time but it is still not something a parent can easily accept. Seeing her these few times lately in person has been extremely difficult and only brings back the wounds and heartache.
Her overall condition has not changed unfortunately and she is still basically in a vegetative state. There are no new drugs or treatments we know of that we can use that do not have risky side effects and she will likely maintain her future in her present condition as she continues to slowly grow. Also being in a facility and having the lack of access to take her anywhere further complicated trying to do anything else for her even if we could try to.
3 weeks ago she had an injury at her facility and had to be hospitalized at UCLA for roughly 2 weeks. Although she is due to recover from it, the ordeal has been a very painful one for her and has forced us to move her to a different facility in Orange County last week. This will make it even harder to visit her, but we can video chat with her more often and make actual physical visits by appointment starting next week instead of waiting for covid lockdowns to change in Los Angeles county.
The entire situation has also continued to have a negative impact on our personal lives. Her mother and I are getting divorced, and hopefully can finalize the process soon amicably. Nothing would make me happier than to try to salvage our situation, but after endless attempts to do so sometimes you have to move on and do what is best for everyone including yourself.
Her sister Zohar continues to miss her and the year has been exceptionally hard for her without school most of the last year, She is still adjusting to not having her best friend to play with so she has been even more bored and lonely than usual. We did get Zohar a pet rabbit to help her pass the time and have something she cares for to play with. I will continue to do anything I can to make her feel loved, appreciated and happy.
Overall I will spare to go into details and hope that our continued prayers and faith for her well being will come true and make an impact for her and all of us. I can't think of anything more traumatizing for a parent and family than enduring this type of situation for an ongoing basis. Thus I will remind us all again to PLEASE watch out for your kids and grandkids at all times around water or any other hazardous places!! Especially as we are still in lockdowns and confined areas, placed like swimming pools and bathtubs may be used more frequently and you must ALWAYS have an eye out for where they are, and what they are doing!
I know I am usually better at doing this but forgive me as I lack the words and energy to make this update more pleasant and uplifting.
May God watch over all of us and grant us the strength and courage to face any challenges that come our way!!
I thank you all for your continued support, prayers and encouragement as this saga continues for our precious angel!!
83Lea Younessian, Michelle Kohan and 81 others
Hi everyone. I wanted to post an update for everyone as it's been a while since this chinese virus has derailed all our lives and made life even more complicated.
First and foremost a reminder to please be vigilant with your kids around water!! There have sadly been several drownings and near drownings over the last few months and it's heartbreaking to hear of them!! Pool and beach time should always be done with a careful eye on your kids!!
As you may recall my little angel has been in a long term care facility since my late brother OBM Haim passed away unexpectedly before 2020 started. Visiting her since covid has been nearly impossible as her facility has been on lockdown as we were only allowed to see her via video calls initially 3 times a wee, and for a while now only once a week .
It's very agonizing to not see her often and have no clue as to how things are going unless we call to check in. It's likely going to stay this way for the next few months before we can try to visit her again as we like and be next to her.
She has had 2 important tests in the last month that have given us unexpected results and that we are working with doctors to get follow ups and opinions on how to proceed. Both her annual brain scan and another overnight test last week revealed she is having seizures, which her previous neurologists claimed were not happening. There is no easy fix for this and we are getting specialist to give us options that won't hurt her even further to try and prevent these from continuing. I have felt even more helpless that before since hearing these unexpected results and although they say it is likely not hurting her when they occur, it is extremely hard to maintain resolve with this news.
She is otherwise still growing and has the same daily routine where she is in her bed or wheelchair all the time. Please continue to keep her in your prayers and know we are so blessed to have the community continue to ask and stay behind her as they have been!
Her older sister Zohar is doing better at home and still misses having her best friend to play and grow up with. We are doing our best to give her as normal and happy a time as we can given all the challenges and being stuck at home like everyone else.
We continue to be hopefully that something positive will happen to her condition and will do our best to stay strong and determined through the road ahead. She is always in our thoughts and although it is a different kind of torture to not see her daily, we are also fortunate she is somewhere safe and being taken care of, as having her home during this lock down would have been an impossible task to handle.
I hope to have better news next time and update on our progress towards her needs to recover. I hope you all take time to reflect on the good things in life, the loves ones you have around you and appreciate every day we are healthy! We all have challenges and struggles to deal with, so please stay positive and don't let the current state of things keep you down! May God heed our prayers and improve the lives of all who are sick including our little precious angel.
Thank you again for your support, prayers and concerns!!
Chaya Alaya's 2 year update
Another year has passed and this fateful day is back to flood my memories of our beautiful Chaya Ayala. There's so many things I want to say, and I hope I can express them properly. It is now 2 years since our innocent and precious daughter has been suffering from damages caused by her near drowning.
Unfortunately this last year has been incredibly difficult for her and our entire family. She has had little to no improvement on her mental condition and brain responsiveness, which is the main part of her struggle. She sleeps often, and does have a pattern of waking up daily to open her eyes, however she is still unresponsive and lacks any ability to communicate or move her body on her own. To put it in simple terms, she is like a “vegetable”, and we can not know for sure if she can hear us when we speak to her, or see us when her eyes are open. She is still getting food via a feeding tube and formula, and her body has grown normally. Although she is only 4 years old, she is as tall and beautiful as our 6 year old Zohar, and has lovely long curly hair. As much as we try to move her limbs and change her position to keep her body in good shape, the lack of mobility she has from being bed ridden is causing her arms and legs to tighten up as well.
We have spend the last year giving her over a 100 treatments of hyperbaric oxygen chamber dives, tried dozens of homeopathic remedies, and tested several drugs to try and improve her brain activity and overall condition. The amount of time and energy we have spent to go thought the additional measures to try to improve her were very challenging! Sadly, none of these have had any significant improvement on her what-so-ever. All of her doctors have given her little to no chance of recovering, and it is likely she will continue to live like this without any improvement for the rest of her life. As brutal as this is to say, this is her reality, and we have to be willing to face it on a daily basis. This nightmare has and will continue to be a daily routine for us.
We had been taking care of her most of this last year at home, with the help of home nursing care that was very difficult to attain as needed and physically exhausting. The scheduling issues, lack of adequate nurses and time to allocate for her daily care has been the most challenging part of our families life ever since this happened. It has impacted our older daughter Zohar and put my marriage on life support. We knew something had to be done to modify how we took care of her as her condition was not improving and our lives would be unsustainable this way. Our lives have been stuck in this abyss and we have had little to no time to take care of ourselves, and Zohar was dealing with so much frustration to see her sister in this state day by day.
Unfortunately as most of you already know, my brother Haim unexpectedly passed away last Decemeber just before Channukah. He loved the girls so much and would come by almost every day to visit and spend time with them. The hardships we faced during that time was too much to bear as she was in the hospital at that time getting over another winter infection, and the nurses were rescheduled since she was not home. The hospital transferred her to a long term care facility which we did not approve of, but we had no choice but to put her there temporarily due to his passing and all the new challenges I had to take upon during his mourning period. During this time, I spent the next month fighting with the system and switching her insurance coverage, and thankfully it got changed at the beginning of February. In the middle of February she was transferred to a sub-acute long term care facility for children called Totally Kids in Sun Valley, CA.
Our lives have changed a lot over these last few weeks. It has been so different to not have her at home and not be able to constantly see her and take care of her!! As hard as it was to make this decision, we feel it is the best for Zohar and all of us to try and regain whatever can come to having a normal life again while still doing our best to be attentive to Chaya Ayala's needs and condition. Driving to visit her is very challenging with the traffic and hours, but we go to see her every few days. It's not easy logistically to coordinate care for Zohar and make the time to visit her. This is another stage of our nightmare we will have to get accustomed to; visiting our sick daughter and reliving the trauma of seeing her helpless and alone with strangers now taking care of her. It's honestly a parents worse nightmare!!
Now we have to try to pick up the pieces and juggle a whole new life moving forward. I have to start looking for work and get back to normalcy after being a caregiver for nearly 2 years, while still going to her doctor appointments and being her advocate whenever necessary. My wife and precious Zohar will also deal with the changes in their own ways.
We still continue to pray, have hope and faith through this dark and uncertain future. We know her life is in the hands of God, and there are so many people in the community and across the world who continue to pray for her. Our daily struggles will be different now, but continue none the less so we will never give up our hope and faith!
We are so grateful for all of you who keep her in your prayers and support us in so many different ways! I don't know how we could have survived the last year without the support of the local community - We are blessed to live in such a supportive community!! Organizations including Chai Lifeline and the Iranian Jewish Federation have been very helpful with assisting us, as well as so many families who call, visit and assist in any way they can.
I must remind us all to be very vigilant with our children around water as it will break my heart to hear of another tragedy like this happening to any other family!!
I have not posted any recent pictures of her on here, but can send to those who request directly.
If anyone wishes to help us you can make a contribution by going here https://thechesedfund.com/chayaayala/help/donate , or call me directly at 310-623-7654.
I hope to get back into real estate sales as I am a licensed broker here in California. They best way to help besides your continued prayers is if you have any referrals for work or business you will allow me to conduct for you when you have a real estate transaction, I will be extremely grateful!
I wish to deeply express my thanks and appreciation for everyone who had devoted their time, energy and money to help our family during our saga!! May the future turn bright and God heed our prayers to heal our beautiful angel and all other kids who are suffering in this world!!
May we all have the strength and inner peace to confront whatever challenges life gives us!
Thank you for reading and sharing this if you wish!
Chaya Ayala @ 18 months 9-11-19
Please read and share.
18 months ago this week my beautiful and healthy daughter had a near drowning accident in the bath tub before going to bed. It is a traumatic memory to replay that night in my mind each time I recall it. Ever since then lives have never been the same, and each day holds a new challenge.
She has been at home with us since leaving the hospital after nearly 2 months in the pediatric ICU at Cedars Sinai Hospital. Although there are times where she is technically awake during the day, she is still considered to be in a comatose status due to her lack of response and vegetative state. Her body has grown and all of her vital organs are working properly, except for her brain, which has succumb to the damages caused by the injuries that night. I have tried and will continue to try alternative medicines and therapies to help improve her functionality and quality of life, but as of now very little has improved in her overall condition. I will not go into the details of how hard it is to take care of a child in her condition both physically and emotionally; it is something I wouldn't wish on my worst enemy.
I know and can't continue to express our gratitude and appreciation to all the people who have been praying for her since they heard of her plight, and who donated funds to help us manage her care and life during this dreadful time.
I personally have not been able to go back to work since the incident, due to the full scope of care she requires 24 hours, day in and day out, and the lack of nursing care that has been a constant struggle. On any given day I spend anywhere from 8-16 hours a day by her side making sure she gets the care she needs and deserves. This will continue until her condition miraculously improves, or I place her into a rehabilitation center, which would be another heart braking and huge step to endure. The good news to share is since the end of last year, she has yet to be readmitted to any hospital thanks to the better care and equipment I have gotten for her which have turned her room into a clinic like setting.
In addition to all the hardships, the funds I had personally raised to help us sustain our family have been exhausted, which makes this a more stressful and difficult daily struggle.
I urge you all to please keep her in your thoughts and prayers, Chaya Ayala bat Tali , and continue to watch your children vigilantly, especially around water and at young ages! The last thing I want to hear is of another tragedy like this happening anywhere in our communities!!
I also ask for those inclined to please click on the link below to give any contribution you can to help us continue to take on this battle with my head high and resolve that is needed. I have no choice but to reach out to our amazing friends, community and Nation to assist us in ensuring we can provide the basic needs until this situation changes. If anyone needs to reach me directly, I can be emailed at email@example.com or cell phone 310-623-7654.
I hope to share good news on my next update and thank you all very much for taking time to read this and share her story.
May 13th 2019 - One Year Letter
3-13 is my personal 9-11
I have been thinking so much about how to express this day and the last year. Our beautiful angel Liel ( Chaya Ayala now) had her near drowning on this sinister day last year. I hope no parent will ever have a day of infamy that forever changed their lives such as this has changed mine.
It's hard to appreciate the fragility of life so clearly as one does when something forever impacts yours. Life is indeed precious and must be fully appreciated, but it is also something we all too often take for granted. Our health, happiness and day to day activities become so overlooked that we forget how easily your journey can make a destiny of it's own. As I can attest to, nothing in life is a certainty.
The last year had been a nightmare that does not go away, but it has also made me realize how much will power we can have when put to a insurmountable task. Nothing can prepare you for a moment like this, and when it does you have no choice but to get back up, day in and day out. However bad it has been, we all have difficulties and hardships to overcome. The challenges in life come in many shapes and sizes. Unfortunately this is one that has no end in sight.
Our little angel has not and likely will not ever recover from her injuries. Her condition has remained relatively the same since leaving the hospital last May. Every day we have and will continue to try to maintain her stability and improve her situation. The amount of medical knowledge I have gained over this year is mind boggling. Among the many challenges we face, the worst part is the uncertainty of what comes next. How long will this end and what shall I make of this misery to become content with this new reality? I feel like a holocaust survivor who needs to pick up the pieces and persevere, but our war is ongoing. My only option is to see the good that has come of this tragedy; which is how we have united to pray and improve our family lives from her suffering.
With all this comes great responsibilities. How should we move on? How do we endure? Each day is a fight, but we will not give up! I have to take this and turn it into good, to make an impact on others and be a light in this abyss of darkness.
Trying to raise another rambunctious daughter is equally hard. How is she coping? Should I pamper her with all she wants or still put my foot down? In many ways trying to manage these aspects that should be easy are harder than for my sick daughter with whom I have no say in her fate. After all, trying to maintain what I should be able to is what I need to concentrate on most.
I can describe the many intricacies involved but I will spare you the pain. All I wish to offer you is some meaningful and heart felt advice:
Refrain from taking life too seriously and try to balance everything you do.
Appreciate what you have, the bounty when it's there and the famine that allows you to recognize it.
Live with no regrets and take time to savor those times with the ones you care about.
Keep your core values at hand, they will help guide you in times of trouble.
Take time to laugh and cry - your soul will need it.
Gravitate to do good, feel better and inspire those around you.
You learn far more about what life is about and who your real friends are when you are down and out.
With all this said, I can not end without thanking so many who have impacted our struggle and allowed us to sustain ourselves over this year. For all the donors who gave their time, money and prayers, we are very grateful and fortunate to have you in our lives!! The community has gone above and beyond to help us sustain ourselves and I have no idea what this year would have become without all your support!! To all the organizations who facilitated goods, had events and assisted in making an impact for our princess, I thank you immensely!
Our saga will continue, and it will not be easy, but knowing we have each other to help and encourage one another makes a major boost to our spirits and endurance.
May we only share in good news to follow, and continue to empower one another towards greatness!
Live, laugh and love.
December 12 2018 Update
Thank you all for your continued prayers and support!! The last 6 months have been full of complexities and challenges. She is always in risk of chest infections due to her open airway, and have has over a half dozen of them since we returned to Los Angeles in mid July. She has been hospitalized each time and come home usually within a week. We have bought a hyperbaric oxygen chamber to treat her at home, which we continue to do whenever she is healthy enough to do so. She sees a handful of specialists, and usually has 3-4 doctor visits a week. This, along with the always difficulty of having nursing care does not leave us any time to do anything else but look after her and our older precious daughter Zohar. We hope and pray her situation will improve as we seek to do all we can to try and wake her out of her coma.
APRIL 26 2018 UPDATE
Chaya needs to be transported to special children's unit in a hospital located in New Orleans. She is still connected to a G feeding tube and Trach which allows her to breathe on her own through her throat.
4-24-18 Second Update
Chaya Ayala had a double procedure yesterday to have a "trach" breathing tube and a "G" feeding tube connected to her. Sadly, these are both needed to ensure she can more easily be fed and breathe until her recovery improves to full health B"H.
You can see how they look in the last picture posted. We will be seeking to get her to the best types of treatments available, most of which will be out of state and not covered by any insurance. Our #1 goal is to have our amazing little princess back!! Please continue to pray, give what you can and spread the word.
Thank you so much!!
Yehudah, Tali, Zohar and Chaya Ayala
UPDATE AS OF APRIL 8th:
Thank you all so very much for your outpouring of support and prayers!! The amount of power you all give us is immeasurable!
We ask that you continue to pray for her and also take on a special task on her behalf. The task is to simply take time to Thank G-d for anything and everything happening in your life.
The good, the bad, the encouraging and sad. Please take time out of your day or night to be thankful, and as time goes by you will be able to do this more easily, longer, and it will also bring about good changes in you and your families as well! Please do this in honor of the full recovery of Chaya Ayala bat Tali so we can all soon rejoice as her miracle becomes complete with a full recovery.
Thank you all SO MUCH !!
Yehudah Younessian & family