Carl Kapes Is Racing Against Time to Save His Children

Both of his sons have been diagnosed with a fatal disease. It's been an uphill battle, but there's a ray of hope.


Published:

Carl Kapes with his son Ryan.//Photo by Luis Javy Diaz

Carl Kapes calls it a death sentence.

His 2-year-old son Ryan was lagging behind the other children at day care. He received treatment for chronic ear infections and underwent speech therapy, but something still wasn’t right.

“He was kind of behind that curve,” Kapes says. “We knew something was off.”

Doctors tested for ADHD and autism, but remained mystified.

In the meantime, Kapes and his wife had their second son, Brayden.

Doctors finally decided Ryan should undergo genetic testing. 

“They said, ‘We’re looking for Sanfilippo syndrome, but don’t look it up. You’ll drive yourself nuts,’” Kapes says. “Of course, I looked it up. I was thinking, All right, this is the worst-case scenario. Whatever it is, we’ll deal with it.”

Then the diagnosis came back. Indeed, it was Sanfilippo—a rare and fatal genetic disorder that gradually causes children to lose the ability to speak, walk and eat. It affects one in every 70,000 births.

The syndrome, discovered by Dr. Sylvester Sanfilippo in 1963, is an autosomal recessive hereditary disorder, which means both parents carry the gene.

Normally, the human body uses sugar molecules to build connective tissues. When the body is finished with those molecules, it uses enzymes to break them down and dispose of them. Children with Sanfilippo syndrome do not have the enzymes that break down the molecules, so the body stores the molecules in cells, causing progressive damage.

When they are born, children with Sanfilippo show no signs of the disorder and appear normal. Then they begin to develop behavioral issues and lag behind their peers. As the syndrome progresses, the children become restless, experience sleep disturbances and often exhibit difficult behavior.

Eventually, they lose language skills, have trouble walking and then lose that ability altogether. Other symptoms include slowed growth, hearing loss, vision impairment, seizures and partial paralysis.

At the time of Ryan’s diagnosis—2009—there was no treatment or cure.

“It was devastating to hear that,” Kapes says. “And the fact that it’s genetic, that my other son could have it...”

So Brayden was tested. It came back positive.

“When the testing came back for him ... you’re at rock bottom,” Kapes says. “You don’t get any lower than that.”

Doctors told Kapes that his children would probably live to be 12 to 15 years old and to “enjoy them while you have them.”

Says Kapes, “I can’t even begin to describe how devastating it is to be told your children will die and there is nothing you can do.”

Brayden Kapes//Photo by Luis Javy Diaz

Moving mountains

Kapes, 41, of Wilmington, couldn’t sit idle and watch his children perish. There was one thing he knew he could do—raise money for research to develop a cure.

He reached out to other like-minded Sanfilippo parents and they formed the nonprofit Team Sanfilippo Foundation in 2010 to raise awareness and funding.

“At that point,” says Kapes, “I thought, OK. We can’t save our kids, but if we can save another family from having to go through this awful process, then we’re doing it.”

Kapes has spent the past seven years organizing dozens of fundraisers such as guest bartender nights, golf outings and run/walks.

In 2012, he climbed Mount Kilimanjaro, the tallest mountain in Africa, to inspire people to donate to the cause. The climb raised about $100,000 through the Team Sanfilippo website. The resulting publicity also helped spread the word about Sanfilippo. Kapes estimates the foundation has raised more than $1 million so far.

The first step toward helping Ryan and Brayden was entering them into a natural history study [a study that follows a group of people over time who have a specific medical condition] in Minnesota through a company named Shire. The biotechnology company focuses on treating patients with rare diseases.

Shire was developing an enzyme replacement therapy, but limited its clinical trials to 4-year-olds and younger, so Kapes’ sons didn’t qualify.

“I understand the reasoning behind it,” he says. “These companies are putting a lot of money into this and they want to come out with a viable product that they can market. There’s a business behind it, so they’re looking for the best candidates that can show the best improvement.”

Kapes didn’t give up hope.

After the Kilimanjaro climb, Team Sanfilippo president Kathy Buckley met Tim Miller, who has a Ph.D. in pharmacology with a focus on gene therapy. Miller was in the process of starting his own pharmaceutical company and knew people who were conducting gene therapy research to treat Sanfilippo at Nationwide Children’s Hospital in Columbus, Ohio.

The situation looked promising. Team Sanfilippo and other similar foundations pooled their money to help fund Miller’s new company, Abeona Therapeutics.

A drug was developed over the next several years and Abeona started producing it in September 2015. The U.S. Food and Drug Administration approved a clinical trial last spring and the first Sanfilippo child was treated in May. 

“We’ve treated three patients and the data from the first two patients is very positive,” Miller said in early September. “Now we’re seeing positive signals that would indicate biopotency, which means that the drug got in and it’s doing its thing to break down the sugars that the kids have a problem breaking down. And we’re hoping to see longer-term benefits as the trial continues.”

Against the wall

Kapes says the trial will treat six to nine children, but he estimates there are at least 100 children who need the gene therapy to save their lives. 

In March 2015, Kapes received a call telling him Brayden had qualified for the upcoming clinical trial. The bad news, doctors said, was that Ryan tested positive for an antibody that would render the treatment ineffective and he wasn’t eligible.

“A second death sentence,” Kapes says. “We went from the joy of news about Brayden’s eligibility to utter devastation about Ryan in a matter of 30 seconds.”

Once again, Kapes and his family faced a mountain. He considered giving up.

“I decided we all have come too far to not give every single one of our children suffering this disease a chance to receive treatment,” he says. “Unfortunately, it is mostly money now that stands between death and saving these children’s lives. Based on the kids’ age, we are in a race against time.”

Ryan is now 11 and Brayden is 8. Both require round-the-clock care. Because of Sanfilippo, they can’t be potty-trained, so they need to be changed, bathed and fed.

“They get to a plateau when they’re 5 or 6 and then they start regressing,” Kapes says. “It’s like having a 1- to 2-year old.”

While Brayden can still run and play, Ryan’s condition has regressed to the point where he struggles to walk on his own.

If Ryan doesn’t receive treatment, the progressive disease will continue to break down his mind and body. In August, he began having seizures and could not sleep through the night.

“Ryan’s having a lot of problems,” Kapes says. “We don’t know what’s bothering him because he can’t tell you.”

Kapes says Sanfilippo children around Ryan’s age receive feeding tubes because they lose the ability to swallow.

“He’s not there yet,” Kapes says. “We’re kind of fighting it off. We’re taking the approach that the longer we can keep him moving, the longer he’ll move. When the kids start to get wheelchair-bound, that’s when things start to backslide.”

Still, Ryan is experiencing some quality of life. He recently graduated from a fifth-grade special education class at Hanby Elementary School.

Kapes expects to know whether his children will receive gene therapy by the end of the year. He recognizes that the window is quickly closing.

“We’re teetering on the edge of keeping them as healthy and as strong as possible, but once the disease progresses so far, the kids can’t go through the tests and the things they need to do to get treated,” Kapes says.

So he’ll continue his fight. Joined by Miller, a photographer and local radio station personalities, Kapes climbed Mount Rainier in Washington in September. He will continue to raise money with the hope that the clinical trial will be expanded so that children with antibodies can also receive treatment.

“We’re at the end, especially for Ryan,” Kapes says. “This is either going to work for him or we’re going to have to just enjoy the rest of what we have with him.”

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April 2018

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Cost: $10

Where:
Winterthur Museum, Garden & Library
5105 Kennett Pike
Wilmington, DE  19807
View map »


Sponsor: Winterthur Museum, Garden & Library
Telephone: 800-448-3883
Contact Name: Information and Tours
Website »

More information

Rosemary Castiglioni – Still lifes and interiors painted with a subtle palette; Jim Gears – Vibrant, impressionistic landscapes in oil applied with a palette knife; Richard Hoff – Detailed...

Cost: free

Where:
The Station Gallery
3922 Kennett Pike
Greenville, DE  19807
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Telephone: 302-654-8638
Website »

More information

THE UNIVERSITY OF DELAWARE LYNN HERRICK SHARP AWARD EXHIBITION A Group Exhibition March 31 - April 26, 2018 OPENING RECEPTION: Friday, April 6, 2018, 5 - 9 PM during Art Loop The Delaware...

Cost: FREE

Where:
The Delaware Contemporary
200 South Madison Street
Wilmington, DE  19801
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Telephone: 302-656-6466
Website »

More information

THE UNIVERSITY OF DELAWARE LYNN HERRICK SHARP AWARD EXHIBITION A Group Exhibition March 31 - April 26, 2018 OPENING RECEPTION: Friday, April 6, 2018, 5 - 9 PM during Art Loop The Delaware...

Cost: FREE

Where:
The Delaware Contemporary
200 South Madison Street
Wilmington, DE  19801
View map »


Telephone: 302-656-6466
Website »

More information

THE FIGURE: THE INDICATIVE AND THE ALLUSIVE Group Exhibition  April 1 - August 26, 2018 Opening Reception: Friday, April 6, 2018 | 5 - 9 PM during Art Loop with Panel Discussion: 6 - 7 PM...

Cost: FREE

Where:
The Delaware Contemporary
200 South Madison Street
Wilmington, DE  19801
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Telephone: 302-656-6466
Website »

More information

THE UNIVERSITY OF DELAWARE ALUMNI INVITATIONAL A Group Exhibition March 31 - April 26, 2018 OPENING RECEPTION: Friday, April 6, 2018, 5 - 9 PM during Art Loop, Artist talk at 7:30 PM The...

Cost: FREE

Where:
The Delaware Contemporary
200 South Madison Street
Wilmington, DE  19801
View map »


Telephone: 302-656-6466
Website »

More information

This community-curated exhibition brings together three painters—Alan Soffer, Brian Dickerson, and Moe Brooker—who are attuned to harmonies and contrasts in abstract forms. Each artist...

Cost: Free with Museum admission

Where:
Delaware Art Museum
2301 Kentmere Parkway
Wilmington, DE  19806
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Website »

More information

GUARDIANS OF THE IMAGE MAKER Group Exhibition & Programs Commemorating The 1968 Riots April 6 - June 29, 2018 Opening reception: Friday, April 6, 2018                      5 - 9 PM...

Cost: FREE

Where:
The Delaware Contemporary
200 South Madison Street
Wilmington, DE  19801
View map »


Telephone: 302-656-6466
Website »

More information

A needle's eye in a pond, a Greek temple in the garden, an Ottoman tent sitting on a hill—these are just a few of the inspirations for our upcoming, first-ever outdoor exhibition Follies:...

Cost: Included with general admission ($5-20)

Where:
Winterthur Museum, Garden & Library
5105 Kennett Pike
Wilmington, DE  19807
View map »


Sponsor: Winterthur Museum, Garden & Library
Telephone: 800.448.3883
Contact Name: Information and Tours
Website »

More information

TRANSIT by Maryanne Pollock January 27 - April 26, 2018Opening Reception: Friday, February 2, 2018 | 5 - 9 PM during Art Loop On Art:  Wednesday, February 21, 2018 | 5:25 - 6 PM Maryanne...

Cost: FREE

Where:
The Delaware Contemporary
200 South Madison Street
Wilmington, DE  19801
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Telephone: 302-656-6466
Website »

More information

Thursday, April 26, 8:00 p.m. Gore Recital Hall David Rose was born in Regina, Saskatchewan and there began his early musical education and violin study. At the suggestion of his first teacher,...

Cost: $15 adults; $10 UD faculty/staff/alumni & seniors; $5 students

Where:
Gore Recital Hall
110 Orchard Rd
Newark, DE  19716
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Sponsor: University of Delaware Department of Music
Telephone: 130-283-12578
Contact Name: Megan Everhart
Website »

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East Coast Garden Center presents: The Spring Festival!  We love celebrating the Spring season, and we invite you to join us! The weather warms, plants break dormancy, and Sussex County becomes...

Cost: free

Where:
East Coast Garden Center
30366 Cordrey Rd.
Millsboro, DE  19966
View map »


Sponsor: Cordrey Companies
Telephone: (302)945-3489
Contact Name: Christine Justice
Website »

More information

Rosemary Castiglioni – Still lifes and interiors painted with a subtle palette; Jim Gears – Vibrant, impressionistic landscapes in oil applied with a palette knife; Richard Hoff – Detailed...

Cost: free

Where:
The Station Gallery
3922 Kennett Pike
Greenville, DE  19807
View map »


Telephone: 302-654-8638
Website »

More information

THE FIGURE: THE INDICATIVE AND THE ALLUSIVE Group Exhibition  April 1 - August 26, 2018 Opening Reception: Friday, April 6, 2018 | 5 - 9 PM during Art Loop with Panel Discussion: 6 - 7 PM...

Cost: FREE

Where:
The Delaware Contemporary
200 South Madison Street
Wilmington, DE  19801
View map »


Telephone: 302-656-6466
Website »

More information

GUARDIANS OF THE IMAGE MAKER Group Exhibition & Programs Commemorating The 1968 Riots April 6 - June 29, 2018 Opening reception: Friday, April 6, 2018                      5 - 9 PM...

Cost: FREE

Where:
The Delaware Contemporary
200 South Madison Street
Wilmington, DE  19801
View map »


Telephone: 302-656-6466
Website »

More information

A needle's eye in a pond, a Greek temple in the garden, an Ottoman tent sitting on a hill—these are just a few of the inspirations for our upcoming, first-ever outdoor exhibition Follies:...

Cost: Included with general admission ($5-20)

Where:
Winterthur Museum, Garden & Library
5105 Kennett Pike
Wilmington, DE  19807
View map »


Sponsor: Winterthur Museum, Garden & Library
Telephone: 800.448.3883
Contact Name: Information and Tours
Website »

More information

This community-curated exhibition brings together three painters—Alan Soffer, Brian Dickerson, and Moe Brooker—who are attuned to harmonies and contrasts in abstract forms. Each artist...

Cost: Free with Museum admission

Where:
Delaware Art Museum
2301 Kentmere Parkway
Wilmington, DE  19806
View map »


Website »

More information

Glory of Stories introduces young visitors to art and the Museum through a story reading followed by an interactive tour of relevant works of art and a studio art project. This program encourages...

Cost: Free to Members, $5 per child and one adult free for Non-Members

Where:
Delaware Art Museum
2301 Kentmere Parkway
Wilmington, DE  19806
View map »

More information

Calling all Doodles!  Pack up your owners and head for Dewey Delaware for the Annual DoodlesinDewey ~ a fun filled time on the beach at a low-key "funraiser" for Food&Friends, a DC based...

Cost: $10-25 suggested

Where:
Dewey Beach
Saulsbury St
Dewey Beach, DE  19971
View map »


Sponsor: Food&Friends
Telephone: 301.467.5523
Contact Name: Amy Scott
Website »

More information

Meeting every Friday, Bayhealth Kent General Hospital, 640 s. State Street, Dover, 7:30 pm., Private Dining Room #3 in the basement. For those who have, or think they may have a gambling problem....

Cost: 0.00

Where:
Bayhealth Kent General Hospital
640 S. State Street
Private Dining Room #3
Dover, DE  19901
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Telephone: 800-855-2CALLGA
Website »

More information

Our thoughts and our stage turn to music, mayhem and marriage with the multi-Tony nominated "The Wedding Singer". Shows are at 8pm on April 27 and 28, and May 4 and 5.  There are 2pm...

Cost: $12-$20

Where:
Wilmington Drama League
10 West Lea Blvd.
Wilmington, DE  19802
View map »


Sponsor: Wilmington Drama League
Telephone: 302-764-1172
Website »

More information

Night Ranger, the band that invented the power ballad of the 1980s, brings its classic sound to the SugarHouse Casino Event Center on Friday, April 27, at 9 p.m. Tickets for the band’s 35th...

Cost: $29-49

Where:
SugarHouse Casino
1001 N. Delaware Ave
Philadelphia, PA  19125
View map »

More information

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East Coast Garden Center presents: The Spring Festival!  We love celebrating the Spring season, and we invite you to join us! The weather warms, plants break dormancy, and Sussex County becomes...

Cost: free

Where:
East Coast Garden Center
30366 Cordrey Rd.
Millsboro, DE  19966
View map »


Sponsor: Cordrey Companies
Telephone: (302)945-3489
Contact Name: Christine Justice
Website »

More information

Rosemary Castiglioni – Still lifes and interiors painted with a subtle palette; Jim Gears – Vibrant, impressionistic landscapes in oil applied with a palette knife; Richard Hoff – Detailed...

Cost: free

Where:
The Station Gallery
3922 Kennett Pike
Greenville, DE  19807
View map »


Telephone: 302-654-8638
Website »

More information

Girl Scout Junior Not just a pretty face! With the Winterthur Garden as a laboratory, earn the Flowers badge while discovering how flowers function and recording your experience in a garden...

Cost: $12

Where:
Winterthur Museum, Garden & Library
5105 Kennett Pike
Wilmington , DE  19807
View map »


Sponsor: Winterthur Museum, Garden & Library
Telephone: 800.448.3883
Contact Name: Information & Tours
Website »

More information

A needle's eye in a pond, a Greek temple in the garden, an Ottoman tent sitting on a hill—these are just a few of the inspirations for our upcoming, first-ever outdoor exhibition Follies:...

Cost: Included with general admission ($5-20)

Where:
Winterthur Museum, Garden & Library
5105 Kennett Pike
Wilmington, DE  19807
View map »


Sponsor: Winterthur Museum, Garden & Library
Telephone: 800.448.3883
Contact Name: Information and Tours
Website »

More information

THE FIGURE: THE INDICATIVE AND THE ALLUSIVE Group Exhibition  April 1 - August 26, 2018 Opening Reception: Friday, April 6, 2018 | 5 - 9 PM during Art Loop with Panel Discussion: 6 - 7 PM...

Cost: FREE

Where:
The Delaware Contemporary
200 South Madison Street
Wilmington, DE  19801
View map »


Telephone: 302-656-6466
Website »

More information

GUARDIANS OF THE IMAGE MAKER Group Exhibition & Programs Commemorating The 1968 Riots April 6 - June 29, 2018 Opening reception: Friday, April 6, 2018                      5 - 9 PM...

Cost: FREE

Where:
The Delaware Contemporary
200 South Madison Street
Wilmington, DE  19801
View map »


Telephone: 302-656-6466
Website »

More information

Maker Fest Enjoy a family-friendly festival of invention, creativity, and resourcefulness, and a celebration of the Maker movement. This event features demonstrations from area makers showcasing...

Cost: Admission is $10 for Adults, $5 for Hagley Members and Youth 6-18; under 6 free

Where:
Hagley Museum
201 Hagley Creek Road
Wilmington, DE  19807
View map »


Sponsor: Hagley Museum & Library
Telephone: (302) 65802400 x 238
Contact Name: Jessica Eisenbrey
Website »

More information

This community-curated exhibition brings together three painters—Alan Soffer, Brian Dickerson, and Moe Brooker—who are attuned to harmonies and contrasts in abstract forms. Each artist...

Cost: Free with Museum admission

Where:
Delaware Art Museum
2301 Kentmere Parkway
Wilmington, DE  19806
View map »


Website »

More information

Water is Life Kenya is hosting its annual Water Walk fundraiser Saturday, April 28th at the Newark Reservoir. Funds raised will help complete Water is Life Kenya's clean water project in Kuku, a...

Cost: 10.00-25.00

Where:
Newark Reservoir
Old Paper Mill Road
Newark, DE  19711
View map »


Sponsor: Water is Life Kenya
Telephone: (302) 894-7335
Contact Name: Colleen Leithren
Website »

More information

Girl Scout Daisy Take a step on your Flower Garden journey during this fun-filled exploration of the Winterthur garden. $10 per girl.

Cost: $10

Where:
Winterthur Museum, Garden & Library
5105 Kennett Pike
Wilmington, DE  19807
View map »


Sponsor: Winterthur Museum, Garden & Library
Telephone: 180-044-83883
Contact Name: Information & Tours
Website »

More information

Discover the thrill of printmaking inspired by nature. Using spring plants and simple materials, students will explore the possibilities of organic and geometric compositions with layered shapes...

Cost: $80 Members, $100 Non-Members

Where:
Delaware Art Museum
2301 Kentmere Parkway
Wilmington, DE  19806
View map »


Website »

More information

Calling all Doodles!  Pack up your owners and head for Dewey Delaware for the Annual DoodlesinDewey ~ a fun filled time on the beach at a low-key "funraiser" for Food&Friends, a DC based...

Cost: $10-25 suggested

Where:
Dewey Beach
Saulsbury St
Dewey Beach, DE  19971
View map »


Sponsor: Food&Friends
Telephone: 301.467.5523
Contact Name: Amy Scott
Website »

More information

Saturday, April 28, 2018 6:00 pm – 10:00 pm Wilmington Country Club 4825 Kennett Pike Wilmington, DE   Guests will enjoy a four course seated dinner prepared by award-winning chefs...

Cost: Call for sponsor opportunities.

Where:
Wilmington Country Club
4825 Kennett Pike
Wilmington , DE  19807
View map »


Sponsor: Meals On Wheels Delaware
Telephone: 302-656-6451
Contact Name: Jennifer Halliday

More information

38th Annual Rare Plant Auction® at Longwood Gardens A benefit that enriches urban neighborhoods through the power of plants. Join us at the 38th Annual Rare Plant Auction® on Saturday, April...

Cost: $125-$600

Where:
Longwood Garden
1001 Longwood Road
Kennett Square, PA  19348
View map »


Sponsor: Delaware Center for Horticulture
Telephone: (302) 658-6262
Contact Name: Lenny Wilson
Website »

More information

Clark Wilson from East Liverpool, Ohio, is a favorite and master with silent films.  He is the house organist at the Ohio Theater and has recently been appointed to the Music Department staff of...

Cost: $20 Adults, $10 Students, Groups Call 302-995-2603

Where:
John Dickinson High School
1801 Milltown Road
Wilmington, DE  19808
View map »


Sponsor: Dickinson Theatre Organ Society
Telephone: 302-995-2603
Contact Name: Bob Dilworth
Website »

More information

Our thoughts and our stage turn to music, mayhem and marriage with the multi-Tony nominated "The Wedding Singer". Shows are at 8pm on April 27 and 28, and May 4 and 5.  There are 2pm...

Cost: $12-$20

Where:
Wilmington Drama League
10 West Lea Blvd.
Wilmington, DE  19802
View map »


Sponsor: Wilmington Drama League
Telephone: 302-764-1172
Website »

More information

Saturday, April 28, 8:00 p.m. Loudis Recital Hall Cap off the day-long Steel Band Festival (in Puglisi Orchestra Hall beginning at noon) with the featured festival concert.   There is no...

Cost: Free

Where:
Loudis Recital Hall
110 Orchard Rd
Newark, DE  19716
View map »


Sponsor: University of Delaware Department of Music
Telephone: 130-283-12578
Contact Name: Megan Everhart
Website »

More information

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