AJ & Aiden
Born September 2011 & March 2013 Ocean Township, NJ
Living with MPS II
“They say it takes a village… be my village. Help us save our children. We can’t do this alone.” -Toni Ann
To watch Aiden and AJ play together is a heartwarming and all-encompassing experience. Two frenetic electrons on a collision course, they buzz around with laughter ringing through the air. It’s dizzying just to try to keep your eyes on them. They nudge you with their heads, grab your hands, and pull you towards them with frantic bursts of energy. Aiden and AJ have things to show you; cartoons and videos on their iPads and toys they are so proud of. Even their food is playfully handed over in their unquenchable desire to share. “I love watching them together,” says Toni Ann, their mother. “They love so much. They have so much love for everybody. They don't know how to hate.”
“Aiden is our gentle, sweet type-of-guy,” says Toni Ann. He is a little more apprehensive than his younger brother. “While AJ is my little beast… If we go into a crowd, he’ll dive in head first.” Despite their differences, the two brothers reserve their most intense affection for each other. “When I wake them up in the morning for school, the first thing they do is hug each other good morning. They are the best of friends.”
Toni Ann and her husband, Alberto, have learned to cherish each moment with their sons. Their two boys have MPS II, which has shaped the family’s daily life, with challenges and blessings. “When it’s a beautiful day, it is truly a beautiful day,” says Toni Ann. “My family makes me incredibly happy,” says Alberto, who goes by the name Tico. “Just spending time with my wife and the boys and seeing them happy gives me the strength to push forward.” Since the difficult diagnosis, over two years ago, the family has taken on this demanding condition with bravery, faith, and love. “When it comes down to it,” says Toni Ann. “It’s worth it. We know how to jump hurdles. And my kids… They can really jump!” She turns towards the boys as they each squeeze juice boxes into their mouths. “You know how to jump, don’t you?” asks Toni Ann, who is answered with smiles and sounds of glee.
Although the family knows how to navigate challenging terrain, the obstacles are numerous and sometimes too high to jump over alone. Just keeping up with the boys is exhausting. They require attention from sunup to sundown and operate at a timbre that can only be described as hyperactive. Aiden and AJ both receive weekly Enzyme Replacement Therapy (ERT) at home in New Jersey. Once a month, the whole family flies to North Carolina where the boys receive an investigational treatment. This whole process—the travel, the hotel, the day-long appointments—is becoming routine. Toni Ann and Tico have adapted to circumstances surrounding MPS in order to save their sons. “We are going to go above and beyond,” says Toni Ann. “We don’t think of anything else, except how we are going to try and save our kids.”
Aiden and AJ are brave. They endure long stays away from home, overnights in hospitals, and numerous surgeries. Each procedure often brings complications or harsh reactions, but they counter these hardships with the ability to make each other smile. Their parents mirror their fortitude, willingly giving up their free time to do all they can for the boys. Tico works construction full-time, yet still finds a way to make it on each trip to North Carolina. “If I have to miss a day of work, I come in on Sunday,” says Tico, who is used to trading in his vacation days for long hours at the hospital with his family. His care for his wife is obvious from moment to moment. Tico is as subtle and solid as a rock. He holds Toni Ann’s hand as she tells their story. She recalls the events that have significantly impacted her family; there is force and tears behind her words. They reveal the sincerity of the family’s willpower, and the strength that helps them to remain hopeful.
When Aiden was almost three years old, the family visited a geneticist on a recommendation from their pediatrician. “We knew he was a little delayed on speech,” says Toni Ann. “We also noticed he was getting very hairy for a boy his age,” she adds. But nothing could prepare them for the news they would receive. The geneticist, after only a brief examination, told them that Aiden and his little brother AJ most likely had MPS II. It was a startling diagnosis.
“I thought I was going to pass out,” says Toni Ann. The couple were told that the boys were going to suffer and die prematurely. “They never mentioned anything about treatments. Never mentioned any of it.” “I thought it was a dream,” says Tico. “It took me days to really snap back to reality and focus on saving them.”
Faced with utter hopelessness, Tico and Toni Ann began to reach out to other families through the National MPS Society. “They were our saving grace,” says Toni Ann. “[They] told us, 'it's nothing like it was ten years ago, even five years ago... Once you start them on the therapy you'll notice a difference right away.'” New developments in treatment are allowing people with different types of MPS to not only survive, but live more capable lives. These treatments gave Aiden and AJ their lives back, and their parents the hope they would need to continue the fight. “[They] gave us a completely different outlook on the disease,” she says. “I could breathe after I talked to them.”
Thus started the process that brought the family to where they are today. They have achieved much despite the last few years’ complications, surgeries, and sickness. “Aiden was predominantly non-verbal,” explains Toni Ann. “But now he can speak to me.” In Aiden's case, his progress with language is going surprisingly well. “I have started to speak to him in Spanish now,” says Tico proudly. “He can understand me!”
Another exciting change waits on the horizon. In the winter months, as most construction projects slow down, Tico has been renovating a new house for his family. Since the boys were born, Tico and Toni Ann have lived in the basement of Toni Ann’s mother’s home where they all share a room. “It’s the whole privacy thing,” says Toni Ann. “We’ve been making it work… but we’re so ready.” The anticipation of owning their own house is huge. Tico explains how the boys will share a bedroom and have their own playroom in the back of the house. “I want to get them a dog,” adds Toni Ann. The new house combined with the positive impact of the boys’ treatments is brightening their future. Tico says, “I believe only good things are in store for our future and it starts here: in our new home.”
In any setting, Aiden and AJ’s presence makes every room a brighter and more vibrant place. Their joy is contagious and a major motivator behind their parents mutual love and support. It seems like little can deter the family from overcoming adversity. “We've changed completely, as people,” reflects Toni Ann. “There is not a hateful bone in my body.” Tico and Toni Ann are gifted communicators, and have kept each other afloat among the seemingly endless tempest of having two children with such vulnerabilities. “We're stronger as a family now. I need him. I can't do this alone.” She looks to Tico. “I need them,” he responds. “I need my whole family.”
Beyond their household, Tico and Toni Ann see a need for more advocacy around MPS along with continued cooperation from the pharmaceutical industry. They anticipate emerging gene therapies that could provide one-time treatments for Hunter’s Syndrome—something that would greatly ameliorate their quality of life. They look towards these developments with hope and clear objectives. They are doing all they can right now, and speak for many families, when they ask the industry for support. “They say it takes a village,” says Toni Ann. “I want to say to them, be my village. Help us save our children. We can't do this alone.”