Bryan Romero and the art of managing childhood leukemia.
It’s the little things that go a long way to create miracles for
children who fight against deadly diseases. Bryan Romero’s story
shows the impact donors make when they contribute to our local Children’s
Miracle Network Hospitals Program.
Eight-year-old Bryan was an active and healthy boy who loved soccer. Then
everything stopped. He was always fatigued. He had frequent stomach aches.
Sometimes he couldn’t get out of bed. The pain was constant. A trip
to the doctors led to a series of tests and scary diagnosis: Bryan had
acute lymphoblastic leukemia, a cancer of the blood cells that is the
most common cause of cancer-related deaths among children.
Bryan’s physicians held out hope that he could recover with the right
treatment. Since that diagnosis four years ago, Bryan has gone through
chemotherapy and other treatments that took a physical and mental toll
on him and his family.
Fortunately, his physicians connected him with a psychologist early in
the process so he could understand and cope with the changes in his life.
They saw that Bryan needed help in managing his stress and pain beyond
what medication could provide. A boy who once defined his life by playing
soccer needed a new passion—and he needed help relaxing at night
so he could get a healing sleep.
Donors to the Children’s Miracle Network Hospitals Program provided
the solution. A Medical Needs Grant, funded by those donations, provided
art therapy for Bryan, giving him a way to be creative in his darkest
hours and helping him find a new passion in life. Today, he paints and
draws on his own and shares his work with his art therapist. The Children’s
Miracle Network Hospitals Program also provided a Medical Needs Grant
to provide therapeutic palliative massage therapy that helps Bryan relax
his body to get a deep, uninterrupted sleep that gives him the strength
to fight his illness and win.
Neither of these “extras” would have been available to Bryan
if it weren’t for the generous donors to our Children’s Miracle
Network Hospitals Program. They have made a real difference in his recovery.
Today, Bryan’s test results look great. He’s starting to get
back to his normal, energetic self, including going back to school.
We all know that doctors can sometimes work medical miracles, but there
are also day-to-day miracles like art therapy or palliative massage that
are provided by a caring community of donors who support the Children’s
Miracle Network Hospitals Program.
Cynthia Guzmán and the support from a caring community.
It helps to have a caring community when you have a child with severe disabilities.
Your world changes when you get the news. There’s something wrong.
Your hopes and dreams during pregnancy quickly turn into fear and anxiety.
Will my child survive? What will her life be like? What will ours be?
Where will we find the strength and help that we need?
José and Esther Guzmán and their daughter Cynthia started
their journey 15 years ago. It was immediately apparent to the Guzmáns
and their doctors that something was wrong shortly after Cynthia was born:
she was having frequent seizures. After a month at Stanford University
Medical Center, her parents learned that she suffered from sulfite oxidation
deficiency, an uncurable disorder of the nervous system that leads to
brain dysfunction, seizures, and difficulty eating. Cynthia also developed
scoliosis as a part of her condition. At 6.5 months, Cynthia was living
on a ventilator just to help her breathe.
“It was very hard for us; it was the beginning of a life change,”
says José. “They told us that Cynthia could maybe live a
few weeks, maybe months.”
Her parents found themselves a part of a small community of families providing
full-time care for a child with a disability. Esther had to quit her job
to provide everything Cynthia needed to stay alive.
Those weeks turned into months and the months into years—15 and counting.
A miracle in itself.
Despite her condition, Cynthia is a happy person. She’s not conscious
of her condition, but she does know the loving family and caregivers who
are the center of her life. She has a love of music she shares with her father.
“I lay on the sofa next to her bed and talk to her while we listen
together. When I talk to her, she knows I am right there with her,”
says José. “I call her by her name. I call her, ‘Cynthia,
Cynthia,’ and she starts smiling, knowing she is not alone. But
a lot of times she likes to be quiet, she barely moves her eyes, like
in her mind she is very, very far away, in her own world. Then I talk
to her, I hug her, I kiss her, and she smiles back to be present with
me. She likes it, and every chance I get, I go and talk to her to make
sure she is okay. She is a happy girl.”
Donors to the Children’s Miracle Network Hospitals Program are there
to support Cynthia and her parents. Through a medical needs grant, CMNH
funds helped the family remodel Cynthia’s bathroom to accommodate
her special needs. Currently, she receives regular palliative massage
therapy to help with discomfort, particularly in the hands and feet—a
service she would not receive without support from a caring community
The care and generosity of people like you help Cynthia’s family
live without worrying if they’ll be able to care for her and makes
it easier for them to enjoy the time that they have together.
“There have been many years of tears, but now we are so blessed,”
says José. “There is so much happiness.”