Community Spotlight: The Berkovits Family

When Milo Berkovits was seven months old, his daycare teacher noticed he was not reaching his milestones. What followed from there on were visits to three different pediatricians, an early intervention assessment, a review by a private occupational therapist, another assessment by a private physical therapist and finally a neurologist visit. At nine months old, Milo was diagnosed with spinal muscular atrophy (SMA) type 2. Milo began treatment eight days later.

Prior to Milo’s diagnosis, his mother Valentina knew very little about SMA. Since the diagnosis, she became dedicated to learning as much as possible about SMA. Valentina discovered there was finally an FDA-approved treatment available and worked to get Milo on Spinraza as quickly as possible. Valentina remembers receiving the difficult diagnosis. She can’t imagine how they would have coped without an approved treatment available. The Berkovitses feel lucky that Milo was born in 2017 and not ten years ago.

Cure SMA understands how frightening a diagnosis can be to a family who has never heard of SMA before receiving the news. As a result, Cure SMA offers newly diagnosed care packages and information packets to support families through an often difficult time. At the suggestion of their neurologist, the Berkovitses contacted Cure SMA and received a care package and informational packets.

Valentina attended one of Cure SMA’s new Summit of Strength events. The Berkovitses also plan on attending the 2019 Annual SMA Conference. Everything is still so new to them; they don’t quite know yet what it means to be a part of the SMA community. Valentina enjoys meeting parents of other children with SMA. By the time they attend conference, her whole family will be ready to connect and become a part of the SMA community, which she believes will be crucial for Milo’s future.

The Berkovitses are impressed with the progress on newborn screening and understand first-hand the importance of an early diagnosis and access to treatment. When Valentina describes SMA to others, she tells them about the difficult realities of the disease. Yet, she always ends with information on treatment and the hope of what it means for Milo and her family.

Valentina and her family are excited about other potential treatments becoming available. The Berkovitses have chosen to engage more with the SMA community and give back by supporting Cure SMA. “We are closer than ever to a cure. Spinal muscular atrophy is a debilitating disease. Individuals with SMA need every chance they can get to live their lives,” said Valentina.

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