This is Today

Pham Family

11.19.2024

Raiden Pham is 4 years old. When he was just a baby, he was diagnosed with UBA5 disorder, a rare neurodegenerative condition affecting the brain and muscles. There are less than 50 children in the world with this diagnosis, more than 10 of which have already died from respiratory system collapse, seizures and disease complications.

Raiden's parents, Linda and Tommy Pham, wake up every day and balance surviving with racing against time for a treatment that could save their son's life. Like in the case of thousands of rare genetic conditions in children, the only hope for Raiden lies in the hands of his parents.

But to make it to a treatment requires more than the already impossible task of raising millions of dollars and putting scientists together. It means keeping Raiden strong enough through a regimented routine of meals, water, medicines, exercises and machines, and up to 5 therapies per week during working hours. All of this responsibility falls on two working parents with little to no extra help.

 

11.21.2024

To survive each day, Raiden's parents always need a plan. They don't have the luxury of just waking up and letting the day unfold. Every few hours they have to ask themselves, "Did we feed him?", "Did we give him water?", "Did we give him his medicines?". And even though they are juggling their jobs, their other child and putting dinner on the table, they can't rush with Raiden or he vomits and could aspirate. 

It's hard to imagine adding anything more to Raiden's life or to their lives, but they live in fear of the day that he begins having seizures, something he hasn't experienced yet, but is only a matter of time with his disease.

And so they do the only thing they can... take each day at a time.

 

11.26.2024

Raiden's parents were high school sweethearts. They married, had their daughter Jordyn, then a few years later their son. But just as their new life as a family of four began, the dreams of their future were shattered when Raiden was diagnosed with a life threatening genetic disease.

Instead of watching their children play together and dropping them at school in the mornings, they work from home so they can take care of their son, sometimes needing to rely on Raiden's 70 year old grandfather to help out so they can get their work done. But he's aging and can't lift Raiden or feed him, so they spend their time together on the bed. 

For Tommy and Linda, it’s hard not to close their eyes and imagine what could have been. 

 

11.27.2024

Jordyn tries to play with her brother, but Raiden can’t talk or walk and has limited ability to use his hands. So she often turns to her parents and asks “Will you play with me?” But they have little to no time or energy left as they struggle to stay on top of their jobs, taking care of Raiden or getting groceries and everything else they need.

Jordyn has learned she just has to wait.

For millions of families like ours, the heaviness we live with every day is not being able to be there for our other children. Sometimes Linda and Tommy sit and watch videos of Jordyn, the best years of her childhood, the ones they’ve missed, the ones they desperately want to live and experience all over again. 

They can’t get those lost times back, but can do everything in their power to start a genetic treatment for their son that gives him a fighting chance, while at the same time pausing to take in the little moments when their children interact in the ways that they can. 

 

12.04.2024

Linda wakes up every morning and tries her best to push reality away, block it out. Staying focused on her work and raising money for a treatment for her son doesn't feel like a choice. It feels like survival. 

As she and her husband Tommy race against time to work with scientists on a treatment and raise the massive amount of money to support the work, they also juggle caring for their son, working from home and spending countless hours every week on calls dealing with insurance and medical providers. 

Raiden is growing, but he can't stand or sit and his neck muscles are weak, so they take turns holding him while they work, resting his head against their shoulders so he can look around, feel engaged in life and smile.