Birthday Buddies: Lily & GiGi’s Turn 5!

On January 11, 2020, it was an unusually warm and sunny seventy-degree day in Lancaster, PA. It was a day that members of the start up committee for GiGi’s Playhouse Lancaster had dreamed of and worked hard for during the past four years.
It was the Grand Opening and Ribbon Cutting at 2503 Oregon Pike, Lancaster, the new home of Pennsylvania’s first Down syndrome achievement center, number 48 in a network of Down syndrome achievement centers across the country. Hundreds of people showed up to tour the new Playhouse and celebrate together. Most of them came because they all have one thing in common: they have a loved one with Down syndrome in their family. Many of them were unsure of what the Playhouse would be able to offer to their family, but had hopes that in some way, they may find acceptance or belonging.

Eight days after the Grand Opening of GiGi’s Playhouse Lancaster, less than 5 miles away, Lillian was born and was being cared for in the Neonatal Intensive Care Unit (NICU) at Woman and Babies Hospital. Her parents, Katy & Ray, sat by Lillian’s side as she lay in her isolette, attached to oxygen and having her heart monitored by a team of doctors and nurses. Lillian was born with Down syndrome, an extra copy of her 21st chromosome. Her family received her diagnosis of Down syndrome prenatally, so they had some time to prepare. However, there is nothing that can prepare you completely to see your newborn laying there, hooked up to machines, unsure of what their future may hold.

She was also born with 2 holes in her heart, which doctors said would soon require open heart surgery. Lily ended up staying in the NICU almost the entire first month of her life and then required open heart surgery five months later at Children’s Hospital of Philadelphia (CHOP).

Unbeknownst to Lily’s parents, GiGi’s Playhouse Lancaster had just opened in their community just a week before Lily was born, and it would soon become a resource for their family and quickly feel like a second home for Lily. At that point, they didn’t realize that Lily and GiGi’s would be Birthday Buddies, celebrating achievements together each year!

On January 11th each year, GiGi’s Playhouse Lancaster celebrates their birthday with a birthday party at the Playhouse! This year, they are celebrating 5 years of purposeful programming in Lancaster! Lily has had fun attending the birthday parties at GiGi’s since the Grand Opening and is excited to celebrate the 5th Birthday party today! Lily has grown and achieved so much over the past 5 years and her family is very grateful for the positive impact GiGi’s has had on her life!


Katy shares this as she reflects back on how she received Lily’s diagnosis…
My first experience with our diagnosis was in the summer of 2019 when I got a phone call from the doctor with results of a blood test. The first thing she told me was, “I have some bad news about your baby.” I immediately froze and didn’t really ‘hear’ anything she said after that. I left work, called my husband, Ray, and went home to start doing what every parent does when they have a question about their child; we spent the day googling it. Every thought that crossed our mind in those next few days was clouded with negativity because of the ‘bad news’ we received.
Katy then shares how they were introduced to GiGi’s…
When Lily was about 8 months old, we learned about GiGi’s Playhouse Lancaster from her speech therapist. The Playhouse was barely 8 months old itself as it opened in January 2020, the same month that Lily was born. Since it was so new, when Lily’s therapist described it to me, she told me about ‘GiGi’s house’ which I pictured to be someone’s actual home where there is a mom or maybe a grandmother named GiGi and they hold playdates for kids with special needs. I had no idea that I was about to visit somewhere way more special than that.

In the fall of 2020, we took our first trip to GiGi’s Playhouse Lancaster. The first thing I heard when we walked inside was “Welcome guys! We are so glad you are here.” Reflecting on that moment, I could not believe how far we had come since we got the diagnosis of ‘bad news’ to being welcomed into a community that was literally built to support Lily and our family.

After that, Lily and her family started attending programs like Language, Music, ‘N Our Peeps (LMNOP) and GiGiFIT. She began attending various events, such as Pancakes and Pajamas, the GiGiFIT Acceptance challenge 5K, and many more!

Katy will always remember Lily’s first GiGiFIT Acceptance Challenge (GFAC) 5K, Inspirational Walk, and Dash for Down syndrome in June 2022 because Lily had just started walking independently the week of the event, which was a challenge she had to work hard at and overcome due to her low muscle tone. Her family, team and the whole crowd cheered her on as she was able to take independent steps across home base on the baseball field at the Clipper Magazine Stadium on that day!

As Lily continues to grow, she continues to attend more programs with peers her age, such as Leaps and Bounds and Destination Discovery. She is showing independence as she develops her fine motor and cognitive skills as well. She is proud of what she accomplishes.

She continues to participate in annual events, fundraisers, parades, World Down Syndrome Day and outreach events. She now participates in the weekly 1:1 literacy tutoring program at GiGi’s. Lily is really gaining skills in communicating with others and participating in group activities.

Katy tells this story after Lily completed her first session of literacy tutoring: Lily usually puts her school artwork on the fridge when she gets home; but after her last tutoring session, she took it all down and proudly hung up her tutoring certificate. Now every morning since then, she goes to the fridge, pulls it down and says, “Mom! GiGi’s! Mine!”, while holding up her certificate. She often asks to take a picture with it, which she does when she gets really excited about something. Then, she puts it back on the fridge, gets a high five and gets so excited when I tell her she got it from her literacy tutoring program. She is so proud!

All of these programs are offered consistently and are completely free to the family. Lily makes friends at GiGi’s, participates in both educational and social events, and receives support through every one of her achievements and Best of All moments.

Lily is also now a big sister to her little sister Abby, and she loves bringing her sister to all of her fun GiGi’s events!

Thank you to the committed group of people who opened GiGi’s Playhouse Lancaster 5 years ago, and thank you to our volunteers, participants and supporters who work together each day towards the mission of GiGi’s: To change the way the world views Down syndrome and send a global message of acceptance for all!
Happy 5th Birthday to our Birthday Buddies: Lily and GiGi’s!
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