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Photo Journal Featured Families The Team

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Photo Journal Featured Families The Team

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Featured Families

The 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 1

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

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 d

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 s

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 he

The Frost Family

10.23.2024 Annabel is 9 years old. She loves baby dolls, painting and riding her bike. But she has a rare neurological disorder called Alternating Hemiplegia of Childhood (AHC) which causes episodes of paralysis, limpness and an inability to resp

10.24.2024 In the Frost family, life revolves around Annabel. Her parents' time and energy go to caring for her and giving her the attention she needs, while at the same time fighting to fix her genetic condition. Her mother Nina stays up until 2

10.29.2024 Despite, or perhaps because of, the struggles that Annabel faces every day, she has a unique ability to connect with people, often others who have lived through trauma or pain. An unspoken understanding. A gift of making

11.01.2024 When Annabel was a baby, she would have episodes of plegia where she would be paralyzed for days. Now, these episodes make her body limp, her words stuck and her response to life slowed down for hours on end. When she falls, her dad Si

The Stecker Family

09.12.2024 Wheeler is five years old. When he was less than a month old, his parents were told he would lose his vision, memory, mobility and life. Wheeler has CLN3 juvenile Batten disease, a condition that, on top of losing nearly all of hi

09.13.2024 Every Monday evening after a long day at work, Wheeler's dad Court drives him an hour each way to riding therapy. It's just one of the many therapies Wheeler takes part in every week, but it's the most unique. He's lifted up onto Dixie

09.17.2024 Wheeler screams out of frustration, his mother's face just inches away. She stays calm and looks into his eyes in hopes that maybe for a brief moment they will connect. Wheeler's parents have gotten used to the occasional outburst

09.20.2024 Wheeler was diagnosed with an ultra rare fatal condition just after birth, and miraculously there were 3 treatments in the pipeline for his condition. Neither of these things happen often. On top of that, his mom was Deputy Chief of St

The Kuzu Family

08.07.2024 This may look like any child, any family, any weekend. A dad and mom sharing the excitement of their daughter, little hands grasping a new toy, eyes wide with curiosity at the tiny image on the camera screen. What you can't see is that

08.09.2024 Before Mila began receiving milasen, I thought about what I would consider a meaningful outcome. Facing a rapidly progressive fatal condition, a longer life was the obvious answer. But when I dove deeper beyond time, I found

08.20.2024 Before Mila was diagnosed, I had no idea that a seemingly healthy child could lose their abilities. I didn't know that Mila's ease in placing little people into her doll house would come to an end, childhood laughter turning

08.23.2024 When I watch Ipek walk down the stairs, I can't help but think back to years ago when she met Mila at Boston Children's Hospital after an injection of milasen. Ipek was two years old and had just started walking. Mila was nine an

The Saladino Family

07.09.2024 Henry Saladino can say a few words, but his mouth and tongue don’t cooperate with his thoughts. He understands everything other 4 year olds can, but his genetic disease, alternating hemiplegia of childhood, or AHC, has made life far mo

07.11.2024 Every week, Henry has numerous seizures lasting 5-10 minutes each. On top of that, every month an even bigger, terrifying one hits unexpectedly and lasts 15 minutes, sometimes more, requiring resuscitation and ambulances. Eac

07.16.2024 For many of us, walking is just something our body and brain know how to do. Before I watched Mila lose her ability to run, then walk, I had never realized how precisely numerous different functions had to come together for a pers

07.18.2024 Henry's favorite toy is Lion, a small wooden shape with lovingly worn off paint and rounded edges. He fits perfectly in Henry's little hand. Lion goes everywhere with Henry. He eats Henry's snacks, takes his medicines before he does, a

07.19.2024 For Henry and his family, the seizures never get easier. Each time a big one comes on, the fear is the same. It's just another day until time stops, just like that, and a seizure runs through Henry's brain like a storm. His parents, M

The LOCKARD Family

04.02.2024 Logan and Iris are two year-old identical twins whose gentle smiles and dark curls pull me in. I met them, together with their brother and parents Trisha and Chris, on Zoom when the girls were tiny, soon after they were diagnosed with

04.09.2024 For many rare disease parents, we carry the heavy weight of knowing that our children depend on us to keep them alive. Trisha and Chris Lockard face this for both of their girls, Iris and Logan. They trade off throughout each day and n

04.17.2024 Like my son Azlan felt when Mila was alive, Jude often finds himself alone. He was 3 years old when his sisters were born and soon after diagnosed with a rare genetic disease. He leans back and watches as his parents prepare meals

04.30.2024 For most parents, it's the big moments in our kids' lives we hold onto - the first time swimming across the pool, the first soccer trophy, the first piano recital. But for families with children like Logan, Iris and Mila, it's the tini

05.03.2024 When Mila started rapidly losing her abilities, I began to see my own brain and body in an entirely different way. It suddenly seemed miraculous that people all around me were capable of lifting their feet to walk, reaching out th

The Gray Family

01.10.2024 In November 2016, as my six-year-old Mila lay weak in the hospital from a battery of tests, I came across a video of Charlotte Gray that made my heart stop. Like Mila, she was born at the end of 2010, had thick silky brown hair,

01.12.2024 Gwenyth Gray is 10 1/2 years old. She smiles as her mother gently, but firmly supports her growing body as she takes slow steps toward the living room where her younger brothers await. Gwen was just 3 when she received one of the firs

01.16.2024 Mila was my first child. Like other new mothers, my time and energy moved away from taking care of myself to taking care of my baby. I nursed her, I bathed her, I rocked her to sleep. Then she grew and became more independent. She coul

02.06.2024 When Mila was diagnosed with a disease I was told was impossible to survive, I immediately wanted another child. But I stuffed that yearning into a box, closed it and pushed it to the back of a dark closet so I could fight for Mil

02.09.2024 In the last few years of Mila's life, when she woke up in the morning, she would lie in bed and wait until I came in to carry her downstairs. I put my hands on her, hugged her, sang to her so she never felt alo

02.16.2024 At the end of Mila’s life, when she could no longer remove a fly from her nose and her brain was losing volume, I was forced to think what Mila would want. A decision no parent should ever have to make. Like me, Kristen Gray

The Fries Family

05.09.2023 In January 2018, we moved from Colorado to Boston for Mila to begin her treatment. Just before we left, two sisters living just an hour away were diagnosed with another form of Batten disease. Lilly was six then. She was running around

05.10.2023 When Cecilia was eight, she was diagnosed with Batten CLN3. So was her little sister Lilly. At the time, there were four promising treatments in the pipeline. There was hope. But despite the explosion of scientific advancements over th

05.12.2023 “Cecilia and Lilly were typical kids until around seven, and then they started regressing. We got their diagnosis of Batten disease just after Zelie was born. She’s five now, but cognitively she’s already surpassed her oldest sisters.

Pham Family Gallery

Frost Family Gallery

Stecker Family Gallery

Kuzu Family Gallery

Saladino Family Gallery

Lockard Family Gallery

Gray Family Gallery

Fries Family Gallery

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