Medical-grade formula for Nataliyah

Nataliyah has a very rare disease called Bainbridge-Ropers Syndrome. She’s one of approximately 200 people in the world with this disease. Every day is a struggle to keep her alive as she has countless medical issues, stops breathing all night long, severe developmental and physical delays, dysautonomia, CP …. The list goes on and on. One of her medical issues is a GI issue. She must be fed through a GJ tube and her formula has to be medical-grade, elemental, broken down formula to safely go into her intestines and bypass her stomach. She cannot have off the shelf formula, hers is via prescription and delivered by a DME medical supply company and paid for by insurance, as it’s so expensive.

On February 18, 2022 the medical formula Elecare Jr, that Nataliyah has been on for years was recalled. She sustains life off of this formula and it’s her primary source of nutrition and hydration. since this date we have not received any formula from the supply company as the two alternatives were already shipped out to other patients and she cannot tolerate the option that is in stock.

I have been spending hours daily sourcing either Neocate Jr or Puramino Jr for her through Amazon or people who have excess supply, and now turning to Mexico to get it shipped in.

No help has been provided by the hospital or GI team. Until the Abbott plant reopens and starts production we are not out of the woods. Even once the plant reopens to start producing her formula again, it will be months until

it hits the supply companies.

Until then, I will continue to have to purchase this expensive formula from various sources. And if I cannot source enough I will be forced to hospitalize her.

Thank you to all of those who are reaching out to help Nataliyah. She’s an amazing little girl ❤️