Designing with Anya

Hortencia contacted me and said she wanted to commission a portrait for her niece and sent me this picture.

I told Hortencia that her niece was adorable and asked for more information.

She said that the little girl in the picture was her great niece, daughter to her niece, Alexis. Anya recently lost her battle to a degenerative and disabling disease, and she wanted a portrait to commemorate her beautiful and precious life. She gave me the link to a FB page where Alexis documented their journey with PKAN.

I was not prepared for what I would see or read. Some posts were very graphic and I will not post those here, but I do encourage you to visit the page if you have time. These are just a few excerpts. The story began with hope and optimism back in February of 2020:

"Grandma came over to play with Anya. She loves her dolly’s and her Barbie dream house. You can’t take her playful spirit PKAN! Sorry not this girl, she’s a fighter!

Got the call I was hoping for! Anya will be participating in a PKAN STUDY. Thank you Spoonbill Foundation for all the work and research you do to find a cure for this rare disease! Praying for the hands and hearts of these incredible people doing the research and campaigning to the FDA to get us to this point!

The messages were optimistic one day and heartbreaking the next:

"Mornings are the hardest. My poor Anya. When I watch her little body twisting and moving uncontrollably I have to fight back my tears so she doesn’t see me breaking down.

"I can’t do anything to stop it or help her until her medicine starts to kick in.

I still can’t even grasp the day that her doctor told me my baby won’t live to be an adult.

"I don’t wanna be mad at God because I know he makes no mistakes but it’s really hard. I just wish it was me instead.

February 2021

We are optimistic! Today we celebrate Anya's first dose of a clinical trial drug.

Classic PKAN is a rare, genetic inherited neurological movement disorder characterized by the progressive degeneration of specific regions in the central nervous system.

My daughter went from walking, eating, going potty, bathing, playing & just doing everything normal kids do to not being able to walk, sit up, or feed herself. Her speech has declined, she is unable to do simple activities or functions without help.

We have a new reality now. Anya experiences dystonia, (sustained muscle contractions causing repetitive movements), dysarthria (abnormal speech), muscular rigidity, poor balance, and spasticity (sudden involuntary muscle spasms). She’s currently on 3 different medications to manage her symptoms all of which have nasty little side effects that we do our best to cope with.

Despite all of this and more Anya starts each day with a smile and barely complains even though she is in a lot of pain and discomfort most of the day.

We are not going to give up hope or the fight against classical PKAN. I will follow my daughters fighting example and start each day with a smile and I will try not to complain because tomorrow is not promised, and positive energy and encouragement is what she needs from me.

Almost one year later, January 13, 2021:

"It is with the biggest ache in my heart to let you all know we are re-admitted into the hospital after a year without any admissions since her diagnosis."

And later in the year, August 31, 2021:

"Anya is having the hardest time still. These dystonic crisis is more then I can bare to watch. I have to excuse myself just so I can find a way to cope. She's pretty maxed out on all her medications and it just seems like the doctors don't really even know what to do. I'm running out of ideas and solutions to suggest. She's had all her medications and is still not having relief at this point. This is torture and agonizing to be living through. I hate to record her and post her like this but I just want to share how ugly it gets. This is PKAN

September 12, 2021

"My girl is being so strong and I'm so thankful for these moments when she's at ease. She is on so many heavy duty things like Ativan, morphine, oxycodone, and Clonazepam daily to get her to this point. Even with all those, her tolerance and pain is so extreme it doesn't put her to sleep. Two nights in a row she has been up all night going through horrible dystonia crisis. Most of the day I get in her bed with her and cuddle with her and we get our sleep in because nights have been a real nightmare.

"I'm dreading the night and just hoping tonight is better then we've had thus far. I've been praying real hard for Anya and for myself so that we can stay strong and keep fighting."

And the final post I read was dated January 13, 2022

"As many of you already know, we lost our beautiful warrior Anya on Saturday, January 8. Our family is heartbroken and mourning the loss of our brave girl. Anya fought PKAN with everything she had, enduring so much since her diagnosis. Despite the pain she was in and all the things this rare disease took from her, Anya always smiled and was our bright light. Anya was her sweet, lovable and amazing self until the end."

I couldn’t hold back my tears as I read Anya’s story. I couldn’t imagine the pain she endured and the way she suffered for the last two years of her young life. Her mother's pain and rage, as well as her helplessness watching what Anya was going through, was beyond comprehension. Those emotions welled up in me as I read each post.

I wasn’t sure how I could even start Anya’s portrait. I couldn’t think about her without crying. The compassion I felt and heartbreak was almost unbearable. I didn’t want my sadness to be reflected in a portrait that was supposed to commemorate Anya's beautiful spirit when all I could think of was her suffering.

I prayed and asked Anya to help me create a portrait that would bring her mother a sense of joy and comfort, if that was even possible. I wanted to create something that would be very special to her and I wanted it to be from Anya.

I sat down at my computer the next morning expecting to have a somber, heart-wrenching experience. Instead, I was filled with calm when I looked at Anya’s picture. I barely remembered any of what I read the night before. I looked into her eyes and felt her joy. I could envision her in the most beautiful garden in the middle of a celebration for HER. I could feel her excitement and playfulness, and I knew that this sweet princess had no memories of pain. I found a garden that I thought would be perfect and knew this was the one she wanted for the portrait. Instead of weeping though the process, I found myself smiling uncontrollably. I pray that Anya’s mom will feel peace and feel the love that went into this portrait.

Hortencia was pleased with the portrait and ordered two copies - one for Anya's mom, Alexis, and one for Hortencia's brother, as Anya was his first granddaughter.

It's beautiful Virginia! It looks like she's at a picnic.

Thank you, Hortencia, for sharing the story of this amazing little girl with me. Whenever I'm down and feel like complaining, I hope the thought of the Princess Warrior, Anya, will come to mind and help me to find gratitude instead.

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For more information on Anya’s journey, I encourage you to visit this page to show support for her family: https://www.facebook.com/AnyasPKANJourney.

Finally, Alexis has a powerful message about being an advocate for loved ones and not blindly accepting all that the healthcare system tries to dictate.

“We were so blindsided by her diagnosis it really feels like at times even the doctors who we think are the experts don't know what to do and how to treat her disease.

“I fight for Anya so hard to make sure everything in my power is done in order to help her have a quality of life. This is exhausting and excruciatingly painful for both her and I at times but we are pushing through.

“I've learned to not be afraid to be assertive in my daughter's care, I've learned to express my thoughts and concerns. I've learned that it's ok to disagree with her doctors and to follow my instincts and to stick to my guns about what I feel is the best decision. I'm not afraid to say no and to refuse what I don't feel is right for us. I don't leave my daughter's life in their hands because I have to be the one to live with the repercussions of any mistake or mismanagement.

“So often people can be bullied in healthcare and made to feel like we have no choice or options. I'm here to tell you, you do and you have to be strong and advocate and research and question everything.

"I always make sure to tell my daughter's doctors especially when she is in crisis to please treat her like she's their own mother, sister, son, daughter, father or brother and to do everything they can to help her. I've plead with these strangers with tears in my eyes to help me save my baby because she is clearly fighting.

“My baby deserves life, she deserves the best and I want to paint that vividly in their minds. She matters and she's worth the fight.

“So I just want to leave you with please don't be afraid to fight and be an advocate and to become the expert when your faced with the obstacle of a condition or disease. Research, question, refuse if you have to, remind providers of the humanity aspect of it all. You can do much more don't be bullied by the healthcare system. Stay strong and fight and advocate for you or your loved ones. We are much more powerful then we think.”

Designing in Spirit,

Virginia