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.