By RYOKO NAKAMURA
RAFU JAPANESE STAFF WRITER
“I just read Hajime’s story. I can help him and his family.”
A single phone call to The Rafu Shimpo has made a huge impact on a brave young man who is suffering from a pernicious disease, and it will take him on the journey of a lifetime.
Hajime’s last wish, to go to Japan with his family and see his grandmother, will come true.
Hajime Miyasaka of South Pasadena is an 18-year-old who has been battling with amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease) since last May. It is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.
Since the diagnosis, Hajime has lost 22 pounds, and his left arm has ceased functioning. His right arm and neck muscles are getting weaker. Over the past month, he has become unable to communicate without a speaking device. An outpouring of support and care from friends, relatives, and the community has helped Hajime cope with his physical pain and declining health.
Unfortunately, the progression of the disease accelerated faster than the family expected. They knew that Hajime’s last wish would have to be granted quickly in order to make the trip before he becomes totally paralyzed.
Soon after The Rafu Shimpo reported his story on May 4, a guardian angel appeared from nowhere, offering to send Hajime and his family to visit Japan at no cost.
His name is Stuart Millheiser of San Juan Capistrano. He runs a small ALS support organization, the ALS Guardian Angels Foundation. He operates the non-profit out of his kitchen with the help of a volunteer who assists the ALS patients and their family members.
Millheiser founded the organization after his daughter told him a story about a 14-year-old girl who had dedicated to her life to caring for her father, who had ALS. The girl and her little brother became caregivers and didn’t have time to be with their friends like other children.
After he learned what this family had been going through, he offered them financial relief. He then realized that there must be more families just like them or even worse off. Since then, he has helped at least 100 patients a year.
On May 14, Millheiser finally met Hajime and his family at The Rafu Shimpo offices. “Nice to meet you, Hajime!” was his enthusiastic greeting. “ALS is an expensive disease. I’m thrilled to help. I’m here for you guys all the way.”
Millheiser shook hands with Hajime.
“I couldn’t believe it at first, but I’m so happy that you found us,” said Hiromasa, Hajime’s father. Hajime typed “Thank you” on his iPad to share his appreciation.
“I used to be a business person, but I didn’t feel fulfilled until I started helping people,” said Millheiser. “I learn from the patients. The courage that most of these patients have and the dedication of the caregivers are astonishing to me.” He then thanked Hajime for letting him be a part of this.
When Hajime told Millheiser through his iPad that he aspires to learn more about engineering, Millheiser encouraged him to communicate with other people living with ALS about how they have accomplished their goals. “There is a lot of living left for you. Trust me. Look to the future,” Millheiser said to Hajime.
The Miyasaka family has also received many heartfelt messages and donations for Hajime from the Los Angeles Japanese community. “We were overwhelmed by the warm support and care from a lot of people.”
The letters included such messages as: “What an inspiration you are to everyone, Hajime!” “It’s a pleasure to meet you brother. I pray that your wish comes true.” “Whatever happens, your open heart is an inspiration to all.” “My husband and I hope you will be able to make a trip to Japan.”
Hiromasa and Hozue, Hajime’s mother, couldn’t read these letters for a while because of the tears that flowed from their eyes. “We wish we could meet each one of them and thank them in person. We can’t thank them enough,” they said.
Thanks to Millheiser and all the support from the community, Hajime is now excitedly planning his trip to Japan. It’s been seven years since the Miyasaka family traveled all together. “I’m excited,” said Hajime with a big smile.
The Miyasaka family knows that it is going to be a long battle. Hajime will eventually need a wheelchair, and the family will have to move to a first-floor apartment and purchase a minivan to accommodate the wheelchair. But for now, big smiles and laughter fill their home.
“I felt really happy for all the kind letters from everyone,” Hajime typed on his iPad. He extends sincere thanks to everybody who has shown their care and concern for him.
If you would like to help, write a check payable to Hiromasa Miyasaka and send it to Hiromasa Miyasaka, 1107 Fair Oaks Ave. #160, South Pasadena, CA 91030-3311. To read more of Hajime’s story, visit http://hajimesalslife.blogspot.com/.
Read an update to this story: Glad to See You, Grandma