Willow's Journey to New Milestones

Dearest Family and Friends,

As some of you know, Willow, our 19 month old, was recently diagnosed with a rare brain abnormality, presenting as Cerebral Palsy. She struggles with global developmental delays, infantile hypotonia, developmental dysplasia of the hip, a diseased upper bowel and benign structural anomalies in her heart and in her vertebrae. She is currently nonverbal, unable to sit independently, and has no autonomy of movement with crawling or walking. She recently underwent multiple surgeries, first investigative to isolate a bleed in her GI tract, and finally for a feeding tube, as she is currently unable to eat solids. For over a month, Willow was an inpatient at Albany Medical Center and NY Presbyterian for severe Anemia, caused by internal bleeding. It’s becoming increasingly clear that Willow is a complicated little puzzle and that a rare genetic condition is the likely unifying factor.

With her new diagnosis, she qualifies for multiple, 3-week intensive programs at the NAPA Clinic, a globally regarded program for pediatrics with special needs. The programs run annually and each session is over $10,000. This cost does not include transportation, accommodations, adaptive gear, childcare, etc. Our insurance will not provide aid in this program, despite the wealth of research supporting the benefits of intensive therapy to break through to new developmental milestones.

Regardless of her physical limitations, Willow is very social! She loves time with her family, playing with her sister and laughing at her puppies. She recognizes friends, likes looking at picture books, loves being outside, shows interest in learning, and has a positive, easygoing disposition. We feel so deeply lucky to love her.

As her parents, we want to ensure Willow has access to every opportunity, potentially enhancing her life. We’re reaching out, asking for support for Willow, with these services. We would be eternally grateful for any contribution, going directly towards Willow’s enrollment in the NAPA Clinic, additional genetic testing, adaptive gear and childcare for Tula.

We believe that she will be able to meet all of her milestones, with the right support. We have been working closely with early intervention services and private therapists to provide her with a rigorous schedule of weekly physical therapy, occupational therapy, special instruction, nutrition, speech and feeding therapy, all of which have reflected growth (albeit slow) in her ability.

We appreciate all your love, guidance and support through these recent tricky months, and are optimistic and excited for Willow's future. Thank you for taking this ride along with us.