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Farida S.

To have a better life.

When someone is applying for a grant through Chive Charities, the application can be pretty extensive.

That’s intentional because we’re trying to identify those with the highest need, and the first step in doing that is asking questions and understanding the situation at hand.

We also want to know a little more about them – do they love listening to music? Are the best parts of their day spent outside? Could they spend the better part of the day watching a favorite TV show?

We’ve seen so many responses over the years that have given us a small glimpse into their lives and personalities. But when we read Sara’s response on behalf of her daughter, Farida, it stopped us in our tracks.

To have a better life. 

It’s such a simple request. And when you see the full picture of Farida’s journey, you’ll understand why.

She was born in May 2017 in Egypt, where she had a large extended family and where her father worked as a police officer. Sara and Sherif already had a son named Hamsa when they found out a little girl was on the way, and they were so excited to expand their family. 

“I noticed that I didn’t really feel her kicking or moving too much, which was much different than when I had been pregnant with my son,” Sara explained. “I told my doctor, but they said it was normal and not to worry.”

Not long after, Farida was born without complication, though she was very small in size. There was no indication of a medical issue, and she did not need any specialized treatment or care. It seemed like all of that worry was for nothing. Farida was here, and she was beautiful.

Less than four weeks later, that worry came back in full force. 

Sara and Sherif noticed that their daughter was not eating much and was having difficulty swallowing and breathing while feeding. They were also concerned that she wasn’t making movements like a typical baby – she seemed stiff and tight and did not contract like most newborns. 

At her one-month appointment, the doctor did a quick exam and ordered many tests. They met Sara’s eyes and said, “She’s not normal.”

“I just caught my breath for a minute and said, ‘What do you mean she’s not normal?’ And the doctor pointed to her legs that weren’t bending or kicking…and that’s when everything hit me.”

As soon as Sara called Sherif, he said, “We need to go to the United States – NOW.”

They wasted very little time. In fact, when they flew to Boston and took a taxi to Boston Children’s Hospital to receive specialized care for their daughter, they didn’t leave for almost two years. 

Two. Years.

Farida was diagnosed with Spinal Muscular Atrophy (SMA) Type 1, the most severe form of the condition. Her family had never heard of the condition, and the news was bleak. Prior to 2017, the year Farida was born, there was no treatment for SMA, and most babies did not survive. Infants with type 1 SMA have difficulty swallowing and sucking and don’t meet typical milestones like holding up their heads or sitting. 

As muscles continue to weaken, children become more prone to respiratory infections and collapsed lungs, and most children with type 1 SMA die before their second birthday.

Farida is about to turn 7 this May. 

That’s due, in large part, to the care and advocacy of her parents and her own untameable spirit.

When they came to the States for better medical care, they had no family or support system in place. They didn’t know she would require two years of inpatient care, but they adapted the best they could. They refused to allow their daughter to sleep alone in the hospital, so Sara and Sherif took turns, rotating between Farida and Hamsa.

Farida continued to do what she does best: defy the odds.

Though nonverbal, she communicates well with her eyes and facial expressions. She is very smart and borderline obsessed with Mickey and Minnie Mouse. She has an exceptionally close relationship with her 10-year-old brother, Hamsa, and could probably get him to willingly do whatever she wants. She is the princess of the family, after all.

There has been a lot to overcome these past few years, and life looks much different than they first imagined. However, this family continues to find a way forward and turn negative situations into something positive.

Farida was born with a rare medical condition, so they did whatever was necessary to find her the best care – including moving to a whole new country.

Farida needed to stay in that same hospital for two years – so they found a way to live there with her.

Farida had no access to reliable and accessible transportation – so they did all the research they could to see if they could find one for her. 

And that’s where you come in. 

Through your generous one-time and monthly giving, we fully funded the cost of a 2020 gray Chrysler Voyager for a total impact of $49,896.

When Sara tried to find the words to thank Chive Charities and our donors, she began to cry. “We can never properly thank you for this gift,” she said. 

“We’ve had many challenging years where it seemed like things weren’t working out in our favor. We would be so close and then it always felt like things would fall through.

“Honestly, I was hopeful when we applied for the van, but I also thought, ‘There’s no way this could happen for us.’ I wanted to hope but I was scared to be disappointed. When I got the approval email, I made Sherif read it because I thought I was imagining things or reading it wrong. When he said we were really getting the van, we both just cried.”

Their family has juggled a lot. And like Sara said, many things have not gone according to plan – but that doesn’t mean there hasn’t been beauty in the journey.

“Farida is my role model,” Sara explained. “I used to be very quiet, and I wasn’t very strong. I didn’t take a lot of responsibility. After Farida, everything changed. I learned from her a lot.”

Maybe we could all learn from her. So many of you have gone above and beyond to make sure recipients like Farida feel seen and supported. You’ve given your time, energy, and money to champion the underdog. You’ve made it possible for them to dream of a brighter future and to see the real, tangible impact of that wish.

To have a better life. Today, that’s more of a reality for Farida. If your donations made that possible, what else can they do? Come along with us and find out. DONATE HERE.

Farida S.'s Updates

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