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Leila P.

You can be bitter, or you can be better.

“You can be bitter, or you can be better.”

This mantra has lived within Toula's heart since the day doctors told her that her baby likely would not survive birth. Her daughter's heart was too far to the left, her right lung was not visible, and nearly all of her major organs were pushed up into her diaphragm.

They described it as a rare condition called congenital diaphragmatic hernia (CDH), something that occurs when there’s a hole in the diaphragm. When a gap forms in that thin sheet of muscle separating the chest from the abdomen during development in the womb, the bowel, stomach, or even the liver can move into the chest cavity. It’s very serious and life-threatening.

“At the delivery, a whole team was there to help her,” Toula explained. “I didn’t know if she would be born alive or even for how long, but once she came out, they placed her on my chest for a few seconds, and she looked right up at me. It was almost like she was saying, ‘Mom, I’ve got this.’”

Leila had defied the odds by surviving her birth but wasn’t out of the woods yet. Not even close.

Typically, doctors will wait as long as possible to perform major surgeries on newborns. But they didn’t have time to wait with Leila; she had surgery just days after being born. The goal was to get her organs back down into the correct positions and to give her lungs a chance to develop properly.

She came through that critical surgery, too. And after, she continued to beat the odds, going onto ECMO, a form of life support where a machine pumps blood through the body to give the heart and lungs time to rest and recover.  The longest she could stay on ECMO was 21 days. She came off it after 16. Mom, I’ve got this.

By six months of age, Leila was home and recovering with her mom and big sister, Bella.

“Cognitively, Leila was perfect, and we were thankful that the worst seemed to be behind us," Toula said. But it wasn't behind them; it was only inches away. 

One morning, Leila's home health nurse had to disconnect her from her ventilator to move her to another part of the house. Tragically, she forgot to remove the water from the tube that feeds into the vent, and Leila aspirated on the liquid, causing immediate cardiac arrest. 

“The nurse froze,” Toula recalled. “So I began doing infant CPR on my daughter.”

As she waited for the paramedics to arrive, Toula squeezed her eyes shut and willed her daughter to hold on, to keep fighting.

Toula’s quick response saved her daughter’s life that day, but despite her best efforts, Leila was without oxygen to her brain for more than 10 minutes. The resulting brain injury caused her to become non-verbal and non-mobile. 

Their life changed at that moment, but to this day, Leila is still saying, “Mom, I’ve got this.”

Leila attends school twice per week, and cooking class has become a clear favorite. She also loves being outside riding her adaptive bicycle, and she even attended a special needs camp last summer where she participated in activities like archery and fishing.

 “We both caught our first fish that summer,” Toula laughed.

“She’s made me stronger. She’s an inspiration, and I stay focused on the fact that she’s here. I can watch movies with her. I can read her books at bedtime. And I’ve come to find that I can be bitter, or I can be better,” said Toula.

In the last eight years, Toula has dedicated her life to caring for her daughter and giving her the best future possible. Big sister Bella even helps with her sister’s care as much as she can. Still, it’s been a lot, and it’s physically draining carrying Leila from one level of the house to the next - let alone the heavy, critical medical equipment that must accompany her.

The strain on Toula's body has been debilitating and it’s exacerbated some pretty serious knee issues. Currently, she receives weekly cortisone shots in her knee instead of the total knee replacement doctors have urged her to schedule. "I just can't afford to be away from Leila for the surgery and recovery," she explained.

Since Leila’s brain injury, Toula has gotten incredibly good at advocating for her daughter. She researches organizations to help fill the gaps that she can’t financially meet, including a wheelchair-accessible van that she secured a few months ago from a different charity. 

But as another high need emerged, she didn't know where to turn. Finally, their Boston Children’s Hospital social worker told her about Chive Charities and encouraged her to apply for help.

Toula and Leila need an elevator lift in their home. Only one of Leila’s three home health nurses is able to carry Leila up and down the stairs, and she’s not at their house full-time. Beyond that, Toula would love to be able to sit out on the porch with her daughter or even take her outside for regular walks. That’s impossible with her knee pain and the effort it takes to move Leila from one room to the next – especially by herself.

This elevator lift will directly impact Toula, Leila, and her caregivers in a way that's difficult to put into words. It's freedom, and relief, and a literal weight lifted from their shoulders. But the cost is exorbitant.

When we spoke with Leila’s mom, she told us she would do whatever it took to cover the balance above Chive Charities' budgeted amount (about $16,000) and planned to finance the rest of the project. Needless to say, it crushes us when recipients feel they have no other option than to go into crippling debt to provide for their children. 

Instead, we let Toula know Chive Charities works with incredible people who could help us cover that gap, including one of our most longstanding and impactful partners, STRATACACHE. You likely remember them from previous life-changing campaigns, including Rozlyn, Henry, the Turner Family, Jack Sawyer, and Envera, just to name a few. 

When we shared the news with Toula, her reaction spoke volumes:

The need was huge, but so was the relief for this family. Thanks to your generous one-time and monthly contributions and the incredible support of our partner, STRATACACHE, who agreed to cover the $16,000 gap, we were able to fund the elevator lift and installation cost in their home for a total impact of $75,000. The impact of that partnership cannot be overstated, and we’re so thankful for it.

We also want to thank Mary and Bill at 101 Mobility for providing a $3,000 discount on the elevator lift and for all of their help throughout the process. Thank you! 

You can be bitter, or you can be better. Despite all they’ve been dealt, Toula and Leila chose the latter. Now, with the equipment they need to continue moving forward with positivity, we know it’ll only be a matter of time before Leila is sitting out on the porch beside her mom with a look in her eyes that says, “Don’t worry, I’ve got this.”

To everyone who’s been part of making moments like this possible, thank you isn’t enough. To those who want to be, we invite you to join our mission to make the world 10% happier. We’ve got this. DONATE HERE.

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