Bella's Miracle

Follow Bella’s journey on Instagram and Facebook: @gessygaloni - Gessyca Galoni

This is Bella, a sweet and radiant little girl who came into the world with a very special mission. Shortly after birth, she was diagnosed with global hypotonia and spent 11 days in the neonatal NICU. At just 28 days old, we received a heartbreaking diagnosis: TBCD syndrome, an ultra-rare, degenerative neurological condition with no known cure. Fewer than 50 cases have been identified worldwide.

Bella is the only known case in Massachusetts.

What is TBCD syndrome?

It is a fatal genetic disorder that affects brain and muscle development. Most children with TBCD lose all voluntary movements by the age of 4, and sadly, many do not live past the age of 5.

Bella, a palliative care patient, currently has leukodystrophy, motor neuron disease, microcephaly,plagiocephaly, global hypotonia, seizures, hip dysplasia and global developmental delays. In January of this year, after another hospitalization, an MRI showed white matter loss and brain atrophy — clear signs that the syndrome is progressing.

Recently, we visited a research center in Columbus, Ohio, which is working toward a cure for Bella’s syndrome. After this visit, we made the decision to start raising funds.

Every contribution makes a difference, share with your family and friends.

Even the smallest gesture can help, and we ask most of all that you keep Bella in your prayers.

Bella is the most beautiful miracle of our lives, she is currently 14 months old.

From the bottom of our hearts, thank you for being part of this circle of love and hope.