Meet the Anderson Family


Lillian Alo Anderson was born November 17th, 2017. At her birth, she

was notably petite with crossed eyes. One of the delivery nurses said

to us "she has such a tiny waist!" But her doctor assured us that she

was just a "small baby" and that her eyes would self correct. When her

eyes were still crossed at 3 months old, we were referred to an

Ophthalmologist for treatment. It was from this point that doctors

began to notice other signs that there may be a bigger issue. When she

still was not able to sit unassisted at 9 months, we started to

suspect there were significant delays in her development. We also

noticed extreme stranger anxiety and difficulties with sleep. Over the

next year she was diagnosed with microcephaly and hypotonia.

Our journey with Physical Therapy, Occupational Therapy and Speech

Therapy began along with referrals to a Neurologist and Geneticist.

After multiple tests, we finally received her diagnosis of CTNNB1

Syndrome in July of 2019 at Saint Peter's University Hospital in New

Brunswick, NJ.

Processing Lily's diagnosis has been an emotional roller coaster. Over

time, we realized we had to mourn the idea of the child we thought we

would have and come to terms with the limitations of her diagnosis.

This included a re-establishing of expectations of Lily's life and our

own lives. We still have questions about what that life looks like:

will she have friends? Will she get married? Will she have children?

What will her education look like?

We have learned to take things day by day, and do our best to help

Lily in every way possible. She has made great strides in her

therapies, and we are excited to watch her continue to progress. Lily

recently started pre-school within the special education program of a

mainstream school, which we are very excited about.

As a 3 year old, Lily is truly a sweet, playful and loving girl with

an incredible laugh and smile. Her giggle is enough to turn a bad day

into a good one. She is determined to walk independently and loves to

explore on her walker. Her other favorite things are watching Elmo's

World, being tickled, dogs, attending hippotherapy, being outside and

just cuddling on the couch with her Mom, Dad and baby brother Rohan.

She is truly a light in our lives.

We hope to see Lily eventually take independent steps and communicate

verbally, and will continue to provide her with the support and tools

to get her to that place. We are so proud of all that she has pushed

through and all that she has accomplished. Each day we are grateful

for her and we are hopeful she can have a fulfilling life.

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