Jennifer cradled her daughter Paola like a baby in El Salvador’s Benjamín Bloom Children’s Hospital. The 4-year-old is prone to seizures and sickness and has suffered heart attacks.

She was diagnosed with spinal muscular atrophy 1 at around 2 months old. Commonly known as Werdnig-Hoffman, infants diagnosed with the disease have difficulty breathing, sucking and swallowing and never reach the developmental milestone of being able to sit on their own.

“Her body is too fragile,” Jennifer said. “Sometimes nurses can’t put a catheter in her because her veins aren’t visible.”

As the name of the disease suggests, little Paola isn’t gaining mobility.

“Her muscles get weaker day by day,” Jennifer said.

Her husband left after Paola’s diagnosis. Jennifer now lives in a room in the hospital where her daughter receives 24-hour care.

A Special Hospital

Benjamín Bloom Children’s Hospital is the only hospital in El Salvador that cares for children with complex conditions like Paola’s.

Many of the patients can't afford to buy medicine, our partner, SAHF/FUSAL, tells us. The hospital is often short on supplies and there is not enough space to take care of all the patients.

Sometimes the hospital does not have all of the necessary pediatric medical supplies.

“The parents and caregivers go through hard times as well,” SAHF/FUSAL said. “They have to spend long periods of time taking care of their children, while not having space for themselves or food to eat.”

Clarissa is the nutritionist in charge of the hospital’s feeding and diets department. She and her team work with many dietary needs in order to care for the patients, including diets that are anywhere from normal to diabetic and practically everything in between.

The hospital’s annual food budget isn’t always enough to provide food 365 days a year, but Clarissa does everything in her power to make sure that no child goes without food at any point.

“That has been my biggest challenge – having enough food with the little budget that I have,” Clarissa said.

'My Biggest Satisfaction is that we Always Have Food' 

Food is one way she and the other hospital staff help control Paola’s symptoms, which is all that can be done for Werdnig-Hoffman – a disease with no cure.

Children with the disease used to have a life expectancy of 2 years old, but medical advances – where available – have helped them live longer.

Paola’s diet consists of pureed vegetables and cereals. Recently, the hospital was able to add MannaPack Potato-D to Paola’s diet to help manage diarrhea.

This fortified potato and soy meal formula complements oral rehydration and assists in replenishing lost nutrients. Its smooth texture makes it appropriate for all ages. It is one of FMSC's three MannaPack™ meal formulas developed by food science and nutrition professionals to supplement nutritional needs and reduce problems with malnutrition.

Because of SAHF/FUSAL's MannaPack Potato-D donation to the Benjamín Bloom Children’s Hospital, many children who suffer from diarrhea are being helped.

“My biggest satisfaction is that we always have food,” Clarissa said. “No matter how much we struggle in the feeding and diets department, we are always sure that every child will have their plate of food three times a day.”