Donegan family continues to struggle

In early February, Angela Donegan spent 11 days at her son’s bedside in Advocate Hope Children’s Hospital. Suffering from as many as 40 seizures daily during his stay, Blake ‘13 tearfully looked at his mother in a way she’d never seen before – a heartrending indication to Angela that this could be his last night. She spent hours conversing with her parish’s priest for consolation over the phone, and through tremendous struggle, Blake spurred himself to recovery.

“Blake is the strongest, happiest, funniest, most courageous fighter I’ve ever met in my life,” Lori Brown, Angela’s best friend and neighbor, said.

As a small child, Blake was diagnosed with Niemann-Pick type C, a terminal illness which hinders the body’s ability to metabolize fats and eventually leads to neurodegeneration and possible respiratory failure, with symptoms such as constant seizures, which Blake developed during his freshman year. His case is one of roughly 500 diagnosed worldwide.

Along with the physical suffering that Blake has endured, his disease has also taken a devastating emotional toll on the Donegan family.

“You’re living and grieving in the same moment,” Angela said. “I grieve everything that he will never go to college, never get married. These are losses I think about every day. It’s a horrible way to live. Holidays [turn into] days of worry. It’s sad at the time, because you think is this going to be the last one.”

Due to Blake’s need of constant medical attention, his mother serves as his primary caretaker, though this responsibility has left her unable to work consistently.

Brown provides one of the strongest bases of support for the family, providing Angela with moral support and taking care of Angela’s four kids during an emergency. Other than her daughters (Riley ’15, four-year old Knox, and 14 year old Logan), a few close friends, and community resources like St. Francis Xavier Parish, Angela has few means of assistance.

“[Her situation] is heartbreaking,” Brown said. “I wish I could do so much more for her, especially in the financial area. It’s rough to see a mom go through that.”

The family is two months behind on their home’s mortgage and utility payments, putting them in danger of foreclosure.

They currently benefit from a fundraiser organized by St. Francis Xavier Parish and the LaGrange Area Department of Special Education (LADSE). Brown also organized an online fundraiser at GiveForward. However, success has been limited.

“Unfortunately, [although] the fundraisers we have are a great help, they can’t end any of the financial problems because Angela can’t work,” Brown said.

According to state government guidelines, Blake doesn’t qualify for the state’s full-time nursing care program. In order to receive this benefit, he would need to be attached to a feeding tube inserted into his abdomen, an idea recently proposed to Angela. However, she refused the offer, as according to LADSE worker Madeline Butler, eliminating Blake’s independence will probably hasten the deterioration of his health.

“I’ll be damned if Angela’s going to let that happen,” Brown said.

For the family, one of the hardest parts of Blake’s disease was witnessing the gradual deterioration of his motor skills. He has difficulty eating, swallowing and walking, yet his cognitive ability remains mostly intact—although he often has trouble with his memory and verbally expressing his feelings.

Despite these recently developed challenges, Blake remains the same kid as before—the kid Brown called “funny, vivacious…the light of our neighborhood.” According to Special Education P.E teacher Scott Walker, Blake motivates himself each day to come to school for the Transitions Program and stay fit using a treadmill and LT South’s swimming pool.

Riley said that without Walker’s help during Blake’s last few years with the program, he might be confined to a wheelchair.

When I [taught] Blake, my main goal was to get him out of his chair. Every Monday and Friday he would swim and he would just love that,” Walker said. “He’s got to be one of the strongest kids in the school.”

Blake also receives a tremendous amount of support from his main nurse Toni Pendergast, whom Angela calls his “second mom.” Next to Angela, Pendergast spends the most time caring for Blake, as she accompanies him to school each day.

Throughout his life before high school, Blake was an avid baseball and hockey player. He had dreamed of playing baseball in college and becoming a firefighter and paramedic in Los Angeles. And although his disease has prevented him from achieving his ambitions, he still finds ways to enjoy his passions.

He never misses a Cubs game on television. When his friends from college return home, they always take him to Hooters, his favorite restaurant. Blake also spends many of his days at the Pleasantview Fire Department, chatting with the firefighters and sometimes riding along in their firetruck.

According to his family and friends, Blake’s positivity and thirst for life shines through his illness. He is one of Walker’s greatest inspirations as a teacher and a person, and for Riley, Blake’s struggle has motivated her to accomplish his greatest dream.

“Blake was always there for me,” Riley said. “I want to become a firefighter for him. I’ve always wanted to do it before he passes.”

Donate to the Donegans at https://www.giveforward.com/fundraiser/vch6