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Journey Rose Stanley, 5

Social media handles:

Tiktok- Stanleyfamilyfun22

Instagram- Stanley_family_fun

Where are you from? I was born in Germany

Where do you live now? North Carolina

Tell us a little about yourself: My daughter's name is Journey. She loves to swim, go on vacation, play with her brother and spend time with her family. She enjoys meeting new friends and making some of her favorite snacks with her mom.

What’s your eye story?

In January 2019 while stationed in Germany, Journey Rose was diagnosed with a rare form of childhood cancer known as unilateral retinoblastoma. After learning of this devastating news my husband and I made the decision to return stateside where we would have the support of family, friends, and doctors who specialize in this rare form of cancer. For 10 months our family lived in a hotel while Journey underwent life-saving treatments at Children's Hospital of Philadelphia and Wills Eye. During her treatment, she was diagnosed with bilateral retinoblastoma and we learned the cancer was at stage D. Her treatment saved her life and cured her body of cancer but left her completely blind in her right eye. During 2020 we had regular EUAs and MRI's and everything seemed to be going well, until Feb 24, 2021, when our family was hit with yet another devastating blow. During her routine evaluations under anesthesia (EUA), the doctors found that Journey's eye was severely damaged and she would need to undergo enucleation surgery. Today Journey is a healthy and intelligent 5-year-old, who has no problem sharing her story.

What has been the most challenging mentally? I would say nothing has changed for Journey. This is all she knows due to the age she was when everything took place.

What has been the most challenging physically? She seems very comfortable without her prosthesis in. I almost think she prefers to have it out.

Where are you now in your recovery?

Journey is 100% cancer free and fully recovered from her enucleation surgery.

What advice would you give to someone going through their eye impairment journey?

The world may see you differently, but it's how you see yourself that's important. In Journey's words, "You are brown, brave, brilliant, and beautiful." This is what I say to her and this was the answer she gave when I read the question to her.

Who is your eye surgeon and ocularist?

Oncologist- Dr. Leahey (CHOP)

Surgeon and opthamologist- Dr. Carol Shields (Wills Eye Hospital)

Ocularist- Joe legrand (Legrand and Associates)

How did you find EYEHESIVE?

On social media, someone from the organization commented on a post on IG.

The Eye-Powerment Program is designed to help individuals and their caregivers overcome and grow through the life-altering experience of vision loss.

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