Princess Ella's Movement of Kindness

07/23/2022

What a blessing!!! Our family is planning a visit to Rock Hill Miracle Park this weekend to see Ella’s special star. Thank you all for your support. This is a very difficult time to this day and the blessings we can share with others in Ella’s honor mean the most. ❤️

We are overjoyed to announce this donation in memory of .
The platform swing was the biggest joy in her life and the family was JOYFUL to be able to raise funds to cover the cost of this swing in her memory.

10/04/2021

From Ella’s Yaya (grandma):

As many of you know, my family lost our littlest angel, my granddaughter Ella, on August 4, 2021. She was just one week shy of her third birthday. Most of her little life she struggled with a terminal illness with no name.

Yes, it’s that rare. In fact, she was the only one in the world they have located with the two specific changes she has to the POLR3A gene. The end result was a debilitating disease caused her to be unable to hold up her head, control the movement of her limbs and for no known reason be unable to speak.

However, due to medical tests and an understanding of what was going on mentally, she had the full mental capacity of a child her age. She loved watching movies and enjoyed walks with her Mommy in a wagon that could accommodate her and all of her machines.

Perhaps, one of her most loved outings involved comfortably relaxing in a flat swing that could support her weight, accommodate for her machines, tubes, lines and medical devices. She could enjoy one thing that other children do and that was the cozy cradle-like swinging motion of her flat swing.

When I began thinking of ways to honor her memory and to truly enhance the lives of children – and adults – who may never know the joy of play, I discovered Miracle Park in Rock Hill, SC. I had heard about it and read a little about it but didn’t realize the dynamic impact it make.

This park is not a “disability park” but is fully inclusive, meaning that children of all abilities can play side-by-side. What makes Miracle Park the only one of its kind in the world? It is the first park of its kind in the US and the first park in the world to hold a Universal Design Certification.

My goal is to honor Ella Marie Kingston and have her name listed on the wall of Miracle Park, the town that was her first home, where she was welcomed and loved by many. My hope is that children and adults like Ella will have a piece of equipment in the park designed to meet their needs.

Even if it’s only one piece of equipment that can be used, that can bring immeasurable happiness to the child and caregiver. Ella’s own swing brought us great joy to watch her close her eyes, dream and give us her faint little smile. For a moment, she was like other children and comforted by her version of “play.”

HERE IS HOW TO MAKE A DONATION:

To make your donation, go to:

https://www.miracleparkrockhill.com

and click on the ‘Donate Here’ button in the middle of the page. PLEASE continue reading. At the question, ‘Would you like to make this a:’ Please select ‘Memorial’ and type in the blank ‘ELLA KINGSTON’.

THIS IS THE ONLY WAY THEY CAN TRACK DONATIONS MADE IN HER MEMORY.

Once I have raised $10,000, her name will go on the wall at the center of the park and you will have the pleasure of knowing that your gift is helping a child like Ella.

Information about Ella’s specific condition can be found here: https://ng.neurology.org/content/6/3/e425

09/18/2021

As a mama, I drove hours trying to find my sweet girl a playground she could enjoy. We ultimately found creative ways at home, but how sweet that a park built for children like Ella is being created in Ella’s first home of Rock Hill, SC.

Our imprint on this earth can exceed the time we are given and that’s what we plan to do in Ella’s honor. We will have more information soon, but we will be fundraising so that Ella can help other children and that her name will be in the park. Please be patient with us, but we will have a special link you would need to pay through so that it goes in Ella’s honor.

Be on the lookout in the coming week for more information!

09/08/2021

I believe most everyone has got their orders in at this point! Our hope was always to wear the shirt, do something good in this world, and keep Ella’s memory alive. Just to get an idea of who makes up our village, drop a photo with where you are from in the comments! Thank you all so very much as always!
www.PrincessElla.org

08/27/2021

When we sat down to brainstorm the vision of Princess Ella’s Movement of Kindness, each person contributed a vision of what would be a good image to have as a logo. We ended up with what you see here. It wasn’t until the time of her funeral that we realized our vision was of Ella celebrating her 2nd birthday in the hospital. That’s a part of what I (Ella’s mom) envisioned when I thought of creating a non-profit.
I'm taking the steps needed to make this an official non-profit 501c3. It looks like it will be best to wait until I'm physically in NC since that is where it will be based out of so I'll keep you posted with our progress.
My goals with the non-profit are to reach people two ways...Number 1 is to help fundraise for POLR3A research & number 2 is to focus on what we can do to have a local impact.
Living (in a sense) in a children's hospital with your child opens your eyes to some things. There are a lot of non-profits helping these hospitals, but one area I thought we could fit into was helping children celebrate their birthday, holidays, etc.
I fully recognize how blessed I was to be able to stay by Ella's side. It’s something I'll forever be grateful for. However, many parents work & have to keep a home for their children to come home too.
Some parents are not in the hospital of their own choosing & some can't for a multitude of understandable reasons. For a parent trying to make ends meet, having enough money to decorate a room or buy a gift is just impossible. That's where I think we may fit in.
Children's hospitals have Child Life that helps with these things when they can, but with COVID & the usual demand of the job, there's no way you can be everywhere you are needed everyday. Little did I know until it was our turn that they help families during a child's end of life.
I'd love to help them focus on those unbelievably special moments each family deserves & help them reach more children. This may be a fluid idea while I plan with the children's hospital in Charlotte once I get there, but these are my ideas starting off.
I am very excited about what we can do & who we can help in Ella's honor. There will definitely be more to come, friends!

08/15/2021

Please join us at princessella.org … New items are now live and previous purchases will ship shortly. What new items are you excited about?

08/13/2021

My sweet girl would have been 3 on Wednesday. I thought it would be a beautiful day to say our goodbyes and make it a day that honored and celebrated Ella. This is not an easy transition. You have all the feelings you’re expected to feel…sadness, anger, gratitude…ashamed about having anger when you’re trying to honor your child by having a movement of kindness… As much as you want to do the right thing, it’s not always easy when experiencing this amount of emotions. My family and I have experienced a relatively abnormal amount of tragedy through recent years. I’ve tried all the negative coping skills and am trying my best to stay accountable and focus on the positive in honor of the amazing child God blessed me with having. I believe in every word I’ve told my patients (as a social worker/counselor) and want to always try to evolve to be a better person. Ella gave me a purpose and she’s left a job for me to do even after her time on this earth. So, even in a movement of kindness that I whole heartedly believe in, it’s okay that we don’t hit the mark every day. Everyone that knows me knows how much I value the field I work in and believe in normalizing mental health while emphasizing resilience. There’s always work to do and a purpose if we seek it. As far as yesterday goes, it was that jumbled mess of the emotions I’ve described and feeling lost, but also so much gratitude for my friends and family. Ella’s movement could not be possible without the amazing friends in my life. A special thank you to Lynda as she shared her amazing talents and time so freely the moment I asked. I’m so thankful for these group of girls who dropped everything (driving hours and hours) to be my side. I also thought I’d share a picture of something so beautiful my brother (Kevin) and mom (Cherri) created in honor of Ella. I think by now it’s well known that Ella watched Coco non-stop in her final months. My brother and mom created their version of the marigold bridge in a potted flower arrangement. It was absolutely beautiful and the love behind it surpassed it all. I made sure my sweet girl was surrounded by her marigolds and I think I have a new favorite flower. Keep the movement going and give yourself some grace. 🧡

08/08/2021

Like many of you, I’m still wondering, “What happened?” I still find myself waking up thinking my baby needs to have food because she’s been too long without, her medications are due, time for this weekly appointment, time to get up and let the nurse in, etc.

Prior to this point, I’ve been the parent reading that a child close to my child’s condition has passed and the fear sits in of how and could I do anything to protect my child? For that reason, I want to share the details of how we got here.

Ella wasn’t acting herself a few days before the hospitalization. She had a pretty bad neuro storm and it is my belief now that she aspirated secretions during…and that a few days later it turned into pneumonia. We subsequently raised her medications that control neuro storms that very day to better address the problem.

The morning before I took her into the hospital the nurse and I also noticed a very small amount of edema in her feet. I had a telehealth visit with palliative care reviewing her symptoms and none of which were severe enough for medical intervention. She slept a lot of the day and by evening had a fever, increased seizures and required oxygen. I packed up our hospital bags and called 911 for transport to the hospital since I wasn’t sure I was able to safely transport her without the help of a medical team.

We arrived to the hospital around 2:30am without going to the trauma bay (we’ve been there so many times so that was reassuring) and we went to a regular ED room. Testing showed pneumonia, some labs off, and the usual GI problems.

I was then informed that of course she needs to be hospitalized, but was extremely stable and we didn’t even have to go to the ICU. We were back with our TCC family. It was even said that if she does her usual and reacts well to the antibiotics, they would even consider discharging her home the next day to acknowledge her comfort care needs.
That day involved a lot of rest and sleeping and that evening her feet and hands got really cold while the rest of her body had a fever. With the fever came seizures. We knew something was wrong with her circulation and with her having a fever so much it was likely she was dehydrated.

She got a water bolus and reacted extremely well to it. They got her back to being comfortable and relaxed. She was requiring more oxygen and they were shocked she wasn’t reacting as quickly as usual to the antibiotics. She’s usually looking better by then, but wasn’t.

They did another work up, placed her on the watcher list for going to the ICU, put her on stronger IV antibiotics,and gave her a phenomenal overnight nurse who watched her very close. She seemed very stable and was even slowly weening off of the high amount of oxygen.

At 7:00am I hear her gasping for air in her sleep. It sounded like her usual secretion burden so I attempt to suction to clear as that always resolves the issue, but it didn’t this time so I called in the medical team…and this is where it starts spiraling.

Within minutes I had a room full of hospital staff, was told her circulation was back to having problems and this time her fever was nearly 104. She was not responding to the antibiotics. I told them the water bolus worked last night and they started another one.

The next thing I knew ICU was in the room and said she needed to go to the ICU, but they wanted a chest X-ray first. The X-ray port comes to the room and I hear the staff talking amongst themselves as they looked at the X-ray say the dreaded words “pulmonary edema” multiple times. They come to me and tell me that she doesn’t look well and has pulmonary edema throughout both lungs.
I look over at Ella and she is coughing up blood tinged secretions from her trach and I see her pulse ox declining. I asked them to give her more oxygen and they inform me there’s no more they can give her as she’s receiving 100%.

It then becomes evident that she is needing more support than her ventilator can provide her and there is an urgency to get her to the ICU now so she can get on their biggest ventilator. She has to be bagged the entire way to the ICU because she can’t get enough support with her ventilator. We get to the ICU where it takes a minute but they sedate her and get her on all of the support she needs.
Palliative care comes in and explains that this may be Ella’s time, but we can safely give her an hour to see if there is any hope of recovering. Over that hour, child life comes in and I tell them she doesn’t need toys and we need to focus on her right now. I see her pulse ox continuing to slowly decline as the hour passes on and palliative care returns to tell me that she is not recovering as hoped and that it’s time to start our plans of how I would like this to go.

Child life comes back in and I’m so confused. They explain that child life does provide toys and comforts for children in the hospital, but they also provide support to families when children are at the end of life. They then help us do memory making with Ella. It was a special time as she was as stable as she could be and comfortable.

We took time as a family and then had to let Ella go. I got to hold her, have “Remember Me” from her favorite movie Coco playing and we were surrounded by her grandparents. They provided her medications so there was absolutely no pain. She left her body 15 minutes later and 10-15 minutes after that her body was finally at rest.

It’s still a lot to process, but I am so thankful to Cincinnati Children’s for taking such good care of my daughter and giving her a peaceful time leaving this earth.

I want to make this very clear, if you have a child with POLR3A and especially the rarest form as Ella had, I’m here for you. I’m willing and want to talk about her and will tell you anything I can about the condition. Ella was one of the longest living children with her severity so I don’t know if there’s anything we could have done differently at this point as we surpassed the researcher’s recommendations for her care.

Regardless, I know many are hurting so much that they can’t talk about it, but I can and will. Just reach out. I’m currently overwhelmed with emotions and messages, but I will get through them all and happily get back to you. Please be patient.

We were blessed to be able to donate specimens to the researchers studying Ella’s condition in Canada. Unfortunately, Ella could not participate in organ donation because of her condition, but I am thankful she will go on to contribute to the research that will hopefully help many other children.