In celebration of Rare Disease Day on February 28, 2022, the WSS Foundation led a storytelling experience featuring individuals with WSS and their parents. This story comes from Devin DeBusk in USA in describing her journey in raising a daughter with a rare disease.

By: Devin DeBusk, USA

Rare is STRONG, Rare is MANY, Rare is PROUD!

Aniston Grace was born on December 20, 2016, at 37 weeks. Her growth during pregnancy was an issue, and she weighed 4lbs 9oz at birth. She was born with a head full of hair and beautiful eyelashes (still very hairy).

During the first 6 months of her life, she cried for 20 hours a day and didn’t sleep. Growth was horrible and eating was a nightmare. She received an NJ tube when she was 3 months old and had surgery at 6 months for a g-tube and Fundo.

Aniston started speech and feeding therapy, occupational therapy (OT), and physical therapy at 6 months (she has since graduated from physical therapy at 20 months after achieving milestones when she crawled at 12 months and walked at 20 months).

Aniston was diagnosed with Wiedemann-Steiner Syndrome at 14 months. She has also been diagnosed with PDA, low tone, developmental delay, mild sleep apnea (surgery to remove tonsils and adenoids), decreased white matter in brain, and sensory possessing disorder.

Rare is STRONG!

Aniston is ROTTEN, SOCIAL, STUBBORN, OBSESSIVE, LOVING, IMPULSIVE, and DETERMINED. She is so smart in some ways and has so many struggles in others. Her current list of struggles includes:

  • Eating – She is still 100% fed through g-tube.
  • Talking- At 4.5 years old, her speech started to explode. She is talking our ears off (even though we can’t always understand her words and sounds).
  • Growth – She currently weighs 32 lbs and has been taking growth hormone for over a year.
  • Behavior – Aniston is a Sensory Seeker, completely impulsive, and can be aggressive when she doesn’t understand something.  She has a high pain threshold and seems to get very obsessed over things. She goes nonstop!

Aniston keeps us on our toes and makes us laugh. My girl can bring me to tears in a heartbeat. I feel lucky to be her mom.

Rare is PROUD!

Aniston currently attends a Blended Preschool (half typical peer models and half kids with special needs). She loves school more than anything. We are seeing her learning and growing.

Aniston continues to attend speech, OT, and now ABA (applied behavioral analysis) therapy. We always worry if we are doing enough to help her reach her potential. She loves therapy and working with “her people.” Did I mention she is social?

Raising a rare girl is exhausting!

It’s special!

It’s frustrating!

It’s encouraging!

We wouldn’t trade our rare girl for anything. We no longer have a tiny baby that cries for 20 hours a day; we now have an active, loud, loving 5-year-old who is making progress on her terms.

Some days, I wish our life was easier but every day is full of love. Thank you, Aniston Grace, for choosing us to be your parents on your rare journey.