In the Valdez family living room there’s a table piled high with containers of a colorful gooey substance. Making this “slime” is 7-year-old Aaliyah’s favorite hobby. She makes a new batch every day, adding glitter and trying different colors.
“It’s like putty but it stretches,” Aaliyah explained.
The goo gets everywhere and drives Aaliyah’s dad, Taylor, a little crazy. The family has run out of Tupperware containers: they’re all full of slime. But he won’t tell her to stop. He thinks the activity might be therapeutic because it gets Aaliyah to concentrate and play with her hands.
At 6 years old, Aaliyah was diagnosed with multiple sclerosis (MS). Now, her parents, Carmen and Taylor, do everything they can to make sure Aaliyah stays healthy and has a happy, active childhood. That includes taking Aaliyah out for fun activities after her MS treatments and letting her craft batches of slime.
MS is a condition that isn’t typically associated with kids. Most people who live with MS are diagnosed between the ages of 20 and 50, according to the National MS Society. But MS affects children more often than you might think. In fact, the Cleveland Clinic notes that childhood MS might represent up to 10 percent of all cases.
“When I was told she had MS I was shocked. I was like, ‘No, kids don’t get MS.’ It was very hard,” Carmen told Healthline.
That’s why Carmen created an Instagram for Aaliyah to raise awareness about childhood MS. On the account, she shares stories about Aaliyah’s symptoms, treatments, and day-to-day life.
“I had been alone this whole year thinking I’m the only one in the world who has a daughter this young with MS,” she said. “If I can help other parents, other moms, I’m more than happy to.”
The year since Aaliyah’s diagnosis has been a difficult one for Aaliyah and her family. They’re sharing their story to spread awareness about the reality of pediatric MS.
Aaliyah’s first symptom was dizziness, but more symptoms appeared over time. Her parents noticed that she seemed shaky when they woke her up in the morning. Then, one day in the park, Aaliyah fell. Carmen saw that she was dragging her right foot. They went for a medical appointment and the doctor suggested Aaliyah might have a minor sprain.
Aaliyah stopped dragging her foot, but over a two-month period, other symptoms appeared. She began stumbling on the stairs. Carmen noticed that Aaliyah’s hands were shaky and that she had difficulty writing. A teacher described a moment when Aaliyah appeared disoriented, as though she didn’t know where she was. That same day, her parents took her to see a pediatrician.
Aaliyah’s doctor recommended neurological testing — but it would take about a week to get an appointment. Carmen and Taylor agreed, but said if the symptoms got worse, they would go straight to the hospital.
During that week, Aaliyah began to lose her balance and fall, and she complained of headaches. “Mentally, she was not herself,” Taylor recalled. They took her to the ER.
At the hospital, doctors ordered tests as Aaliyah’s symptoms worsened. All of her tests appeared normal, until they did a full MRI scan of her brain that revealed lesions. A neurologist told them that Aaliyah most likely had MS.
“We lost our composure,” Taylor recalled. “It was a feeling like a funeral. The whole family came by. It was just the worst day of our lives.”
After they brought Aaliyah home from the hospital, Taylor said they felt lost. Carmen spent hours searching for information on the internet. “We were stuck in depression immediately,” Taylor told Healthline. “We were new to this. We had no awareness.”
Two months later, after another MRI scan, Aaliyah’s MS diagnosis was confirmed and she was referred to Dr. Gregory Aaen, a specialist at Loma Linda University Medical Center. He talked to the family about their options, and gave them pamphlets about the medications available.
Dr. Aaen recommended that Aaliyah start treatment right away to slow the progression of the disease. But he also told them that they could wait. It was possible Aaliyah could go a long time without another attack.
The family decided to wait. The potential for negative side effects seemed overwhelming for someone as young as Aaliyah.
Carmen researched complementary therapies that might help. For several months, Aaliyah seemed to be doing well. “We had hope,” Taylor said.
About eight months later, Aaliyah complained about “seeing two of everything,” and the family went back to the hospital. She was diagnosed with optic neuritis, a symptom of MS in which the optic nerve becomes inflamed. A brain scan showed new lesions.
Dr. Aaen urged the family to start Aaliyah on a treatment. Taylor recalled the doctor’s optimism that Aaliyah was going to have a long life and be all right, as long as they started fighting the disease. “We took his energy and said, ‘OK, we need to do this.’”
The doctor recommended a medication that required Aaliyah to receive a seven-hour infusion once a week for four weeks. Before the first treatment, nurses provided Carmen and Taylor with a disclosure of risks and side effects.
“It was just terrible because of the side effects or things that can happen,” Taylor said. “We were in tears, both of us.”
Taylor said that Aaliyah cried at times during the treatment, but Aaliyah didn’t remember being upset. She remembered that at different times she wanted her dad, or her mom, or her sister to hold her hand — and they did. She also remembered that she got to play house and ride in a wagon in the waiting room.
More than a month later, Aaliyah is doing well. “She’s very active,” Taylor told Healthline. In the morning, he still notices a bit of shakiness, but added that “throughout the day, she is doing great.”
Through the challenging moments since Aaliyah’s diagnosis, the Valdez family has found ways to stay strong. “We’re different, we’re closer,” Carmen told Healthline. For families facing an MS diagnosis, Carmen and Taylor hope their own experience and advice is helpful.
Finding support in the MS community
Since childhood MS is relatively uncommon, Carmen told Healthline that it was hard at first to find support. But getting involved in the wider MS community has helped. Just recently, the family participated in Walk MS: Greater Los Angeles.
“A lot of people were there with lots of positive vibes. The energy, the whole atmosphere was nice,” Carmen said. “We all enjoyed it as a family.”
Social media has also been a source of support. Through Instagram, Carmen has connected with other parents who have young children with MS. They share information about treatments and how their kids are doing.
Looking for ways to add fun
When Aaliyah has appointments for tests or treatments, her parents look for a way to add some fun to the day. They might go out to eat or let her choose a new toy. “We always try to make it fun for her,” Carmen said.
To add fun and practicality, Taylor purchased a wagon that Aaliyah and her four-year-old brother can ride in together. He bought it with Walk: MS in mind, in case Aaliyah became tired or dizzy, but he thinks they’ll use it for other outings. He’s outfitted it with a shade to protect the kids from the sun.
Aaliyah also has a new stuffed toy monkey that she received from Mr. Oscar Monkey, a non-profit organization devoted to helping kids with MS connect with one another. The organization provides “MS monkeys,” also known as Oscar’s buddies, to any child with MS who requests one. Aaliyah named her monkey Hannah. She likes to dance with her and feed her apples, Hannah’s favorite food.
Making healthy lifestyle choices as a family
Although there’s no specific diet for MS, eating well and living a healthy lifestyle can be helpful for anyone with a chronic condition — including kids.
For the Valdez family, that means avoiding fast food and adding nutritious ingredients to meals. “I have six kids and they’re all picky, so I kind of hide vegetables in there,” Carmen said. She tries blending vegetables like spinach into food, and adding spices like ginger and turmeric. They also started eating quinoa instead of rice.
Being a team and sticking together
Taylor and Carmen noted that they have different strengths when it comes to managing Aaliyah’s condition. They have both spent time with Aaliyah at the hospital and at doctor’s appointments, but Taylor is more often the parent at her side during difficult tests. For example, he comforts her if she’s afraid before her MRIs. Carmen, on the other hand, is more involved with researching MS, communicating with other families, and raising awareness about the condition. “We complement each other well in this battle,” Taylor said.
Aaliyah’s condition also brought some changes for her siblings. Right after her diagnosis, Taylor asked them to treat her extra nicely and to have patience with her. Later, specialists advised the family to treat Aaliyah as they normally would, so that she wouldn’t grow up overprotected. The family is still navigating the changes, but Carmen said that overall, their kids fight less than in the past. Taylor added, “Everyone has been dealing with it differently, but we’re all with her.”
“I just want the world to know that kids this young get MS,” Carmen told Healthline. One of the challenges the family faced this year was the feeling of isolation that came with Aaliyah’s diagnosis. But connecting with the larger MS community has made a difference. Carmen said attending Walk: MS helped the family to feel less alone. “You see so many people who are in the same battle as you, so you feel stronger,” she added. “You see all of the money they’re raising, so hopefully one day there will be a cure.”
For now, Taylor told Healthline, “We take one day at a time.” They pay close attention to Aaliyah’s health, and the health of her siblings. “I’m thankful for every day that we have together,” Taylor added.