Disabled Milford girl shares hope through modeling

By Craig Horleman

MILFORD — The way Sarah Wolfe sees it, if her daughter can be the same inspiration the two have sought for themselves over the last decade, this will all be worth it.

She and her 10-year-old, Alyssa Wolfe, received news late last year that no one wants to hear, no matter how old you are — chances are, Alyssa will never walk, much less stand, on her own.

The Milford resident, who has cerebral palsy, has been in and out of Nemours Children Hospital in Wilmington her entire life.

“We’ve spent almost every summer of her life in casts and rehab centers,” said Ms. Wolfe.

However, following Alyssa’s last surgery, doctors said there was little hope of any improvement.

With minimal use of her limbs, difficulty speaking and a feeding tube, Alyssa needs constant care. Her life is difficult to be sure. But she has managed to turn the challenges into a beacon of positivity and hope, both for herself and others.

Having graced the cover of a pamphlet advertising the work of the orthopedic department at Nemours two years ago, Alyssa, a pupil at Lulu M. Ross Elementary School, still gets recognized by those who use the facility’s services and is always delighted by the response she receives.

In an effort to bring some light into her daughter’s life after their devastating news, Ms. Wolfe, a single mother, asked around about how she could have that same photo experience once again. A recommendation led her to Milford photographer John Mollura.

The two touched base in April, and just last month, Alyssa had a full photo shoot with makeup, hairstyling, clothes — the whole nine yards.

“She was in her element. That’s all I can say to explain it,” Ms. Wolfe said. “I saw a side of her come out that I’ve not seen. ... To really see her get lost in the moment — I’ve participated in sports, and you can get lost running or get lost in a game.

Dancers get lost in a dance position, lost in music.

“You could just see her transport to another place. It was incredible.”

An unexpected beginning

To comprehend the importance of that June 23 evening, it’s necessary to understand the long, arduous road Alyssa and her mom have traveled.

Alyssa is a twin to Zachary, and her mother was hospitalized almost her entire pregnancy. She suffered from hyperemesis, a pregnancy-related condition that can require hospitalization and treatment with IV fluids and anti-nausea medication.

“I was in and out of a conscious state. I never had water or food the whole pregnancy because I was on a feeding tube,” Ms. Wolfe said.

The twins arrived two months early, with Alyssa weighing 3 pounds, 4 ounces and Zachary at just 3 pounds, 2 ounces.

“They were in the NICU for a while. Zachary had the most problems, though. He was in the NICU for a couple of weeks, and then, we were discharged a few hours before he had to be resuscitated in an ambulance and then flown by chopper to (Nemours), and then, he was on life support in the intensive care unit up there for a while. It was so bad, we literally were making funeral arrangements for him. And Alyssa was in and out of a good state,” Ms. Wolfe explained.

“Obviously, her mom’s in crisis because her brother’s in crisis. We’re having trouble nursing her, and there’s just so much stuff going on. And they’re so tiny.”

Zachary later came off life support, and while he did suffer some seizures and developmental difficulties early in life and underwent physical and occupational therapy, Ms. Wolfe said that, by the time he was 6, he was a “fully typical” child.

The same could not be said for Alyssa.

“It’s almost like they reversed roles. So he comes home, and we had maybe two months of stability between the two of them. And then, we ended up back in the hospital. Alyssa was just so sick,” Ms. Wolfe said.

“I wasn’t scared about anything because they were so little. They told me they were going to need some extra support. But when we were in the hospital, they kept rounding up these teams. And everyone’s whispering, and I got nervous, and they said that they need to put her in an MRI right now,” Ms. Wolfe said.

Doctors needed to look at Alyssa’s brain.

‘Expect nothing’

“And at this point, neurology is in there, orthopedics is in there, cardiology is in there, and I’m like, something’s not OK. Every specialist in the world is in this room right now. So they did an MRI, and they found out that she had two hemorrhages in her brain, and at this point, she’s almost 6 months old. So that is our beginning,” Ms. Wolfe said.

“I can remember it like something you don’t want to remember but detail for detail, just sitting in the room. And the neurologist coming back and telling us this. And me saying, ‘What does that mean?’ And I’ll never forget. He said, ‘It’s going to be a journey. Expect nothing and be grateful for anything.’ And I’ve kind of, like, made that a mantra in my head. Other people are like, that’s terrible, but it actually was the best advice because it is a tough journey.”

Her daughter has never stood on her own. She’s never walked. She has just a little bit of trunk control. Ms. Wolfe estimates that she has had 13 surgeries related to muscle lengthening and reconstruction of her feet, elbows, wrist and fingers.

At the end of 2021, Alyssa had yet another surgery, with an outcome that rang of finality.

“They told us (that,) while we were able to fix positioning of a lot of her bones, we were not able to resolve functionality. So her feet look straight now — they were a mangled mess. They were folded under pretty bad. So now, they’re straight, and they’re flat. But the functionality of them holding up her weight, especially as she gets older or stepping and walking on them, isn’t there,” Ms. Wolfe said.

The journey was made that more difficult by a nursing shortage due to COVID-19 and therapists telling them that Alyssa has received about as much treatment as she can have.

But earlier this year, when Ms. Wolfe felt at her lowest about the situation, she asked Alyssa, “What makes you happy? And she started saying, ‘I’m pretty.’ Everybody tells her she’s so pretty all the time,” she said.

“‘That makes you happy?’ ‘Yeah,’ she said. And then, she started talking about the pamphlet. I said, ‘That makes you happy?’ And I said, ‘So you want to be a model?’ ‘Yeah, I want to do that,’ she said.”

Shining a light

Not knowing anything about Mr. Mollura’s business, Ms. Wolfe’s neighbor recommended the luxury portrait photographer.

After contacting him in April, the family had a consultation in May, and on June 23, Alyssa was being photographed in several locations around Milford.

There were a variety of poses in full makeup and hair and in a host of outfits chosen by Mr. Mollura and his team, with input from Alyssa.

Mr. Mollura said the chance to do this struck a chord deep within him.

“I really sympathized with her because I was born with a condition where I had a severe clubfoot, and it was questionable what my abilities were going to be. I was just excited to be part of the project,” he said.

“To give Alyssa that experience, it was really just mind-blowing. She, quite frankly, deserved it after what she has been through in her life.”

They were helped by Kelly Halliday, who consulted on hair, makeup and clothing, and Jeremy Smeltzer, who assisted with the photography, featuring Alyssa in her assistive devices.

With Ms. Wolfe helping to transport Alyssa to various locations and, in some cases, literally carrying her, they were able to take photos that would change Alyssa’s life and, potentially, others’.

“Her legs were shaking when I put her in the car when we were done. She literally maxed herself out. She had cuts and scrapes on the back of her legs. And she opted to be barefoot because we attempted a pretty sandal, but her leg rolled on it. And she was really frustrated at that at first, and I was like, ‘Just move on. Let’s just do it in bare feet,’” Ms. Wolfe said.

“And she just pushed herself with everything they kept telling her to do. ‘Look this way, look up, look back. Open your mouth, close your mouth, smile,’ just these different things. She just was so attentive and worked so hard. Just when we were wondering if she was done, she’s like, ‘I can’t do anymore.’ I said, ‘Are you OK?’ She’s like, ‘I just want McDonald’s.’ She was literally done.”

Mr. Mollura said he had to adapt his posing instructions due to her limited mobility. But there is one shot of which he is most proud.

“One of my favorite photos that we took that night is not only because Alyssa looks great in the photo, but it was her determination to get the shot. It’s a photo of her wearing a hat, where she’s kind of grabbing the brim of the hat,” he said.

“That photo is super-special to me because of the amount of determination that it took to just grab the brim of the hat, that most people don’t think twice about. That was extremely difficult for her to get her arm stretched and mobilized in that position and have it look natural. And I give her so much credit because she refused to quit.”

The photos have made the rounds on Facebook, where scores of people have complimented Alyssa on how good of a job she did and how beautiful she looks.

It has heartened both mother and daughter to no end.

“There was one woman who wrote that her child just got diagnosed with CP and this is so cool to see something positive. And on that comment, I lost it. I’m going to cry right now because I was like, this is full circle. We have looked for so much inspiration for her. Could she really inspire other people now?” Ms. Wolfe said.

When asked what she likes about modeling, a big smile came over Alyssa’s face.

“It’s fun,” she said, haltingly.

The hope is that she gets plenty more opportunities to model. Once other photos are taken, Ms. Wolfe will submit them to agencies, including one that deals with models who are part of underrepresented segments of society, such as the disabled.

“Maybe this is her calling. She should be doing something that makes her happy. I sure as heck hope there’s a purpose out here past all this stuff, and if it’s to give other people perspective — I don’t even really have the words yet. It just feels like a cloud and the way that even John, Kelly and others just continue to communicate with us,” Ms. Wolfe said.

“I don’t know. She has some sort of light in her, and I feel like the light’s been turned on now. And I hope that it helps people. Like there’s some sort of purpose behind the trials — that they weren’t all for nothing. Because that is not a good place to be.”