Middle Schoolers Raise Money For Boy With Rare Syndrome

When Adelaide Ehlis, a 7th grader at first met 2-year-old Tom Hanrahan, she only noticed how cute he was—and not that he suffered from a rare genetic disorder known as Angelman Syndrome.

But when she found out about the disorder she knew she had to do something to lend a hand.

And so she and her friends launched the Soap For Hope project, which aims to raise money for Angelman Syndrome research through the sale of handmade soap.

Indeed, Ehlis, a bubbly girl with a great smile, said she learned how to make soap years ago by taking a class at the

She said it's "easy" in that you just have to melt the base (purchased at Michael's) before adding fragrance oils and colorants. You then pour that base into soap molds and wait for them to harden.

"I even do soaps with frogs or other little surprises inside that kids like," she said.

Ehlis found out about Tom through her mother, Kate Horrigan, who is Tom's physical therapist.

"He can't crawl and the family needs help getting him a walker," Ehlis said.

As a result, Ehlis and her friends, who had toyed with the idea of raising money for a school in Africa, decided to channel their soap profits into a cause closer to home.

Tom is the son of North Caldwell residents Joanna Orford and Mike Hanrahan.

Because he has Angelman Syndrom, Tom will never learn to speak or achieve other cognitive milestones unless a cure is developed.

Unlike other neurological impairments, such as Alzheimer's Disase and autism, the cause of Angelman Sydrome has been identified. What gives Orford and Hanrahan hope are clinical trials on mice, which have successfully corrected the syndrome. With drug trials scheduled to begin on humans, Hanrahan also has done his part for the cure by raising funds.

On his blog, AngelmanSucks.com, Hanrahan, a computer programmer, writes in the voice of Tom's alter ego. As Hanrahan points out on his site, "Researchers think a cure is probable rather than possible. All they need is the sweet green to make it happen."

The site asks for a mere donation of $1 towards the $30 million most likely needed to find a cure.

Ehlis and her friends already have raised $800 for the cause through the sale of their soap with an eye towards raising another $200 by the end of the year.

Over the summer, they sold their soap, priced at between $3 and $5 a bar, from a stand at the Montclair Farmers Market.

Today if you want to buy a bar of soap—which makes a great holiday gift—just email Ehlis at soapforhope123@gmail.com and she'll send you an order form.

Ehlis said you can find out more about Angelman Syndrome on the Internet.

Indeed, the syndrom occurs in 1 in 15,000 live births and is often misdiagnosed as cerebral palsy or autism. Characteristics of the syndrome include: developmental delay, lack of speech, seizures, and walking and balance disorders. Individuals with Angelman Syndrome will require life-long care.

When it comes to Tom, a few months after emigrating from London, when Tom was only four months old, his mother noticed developmental delays after enrolling him in a swim class.

The Angelman Syndrome Foundation website is the best place to keep abreast of current information regarding research, education, general information and therapies for Angelman Syndrome.

Ehlis and her friends Soli Garzon, Claire Downie, Nora Fried, Anna Kanengiser, and Ella McDonald are all involved in the Soap For Hope project. McDonald and Kanengiser both go to while the other girls attend Renaissance. All are in 7th grade.