Last fall, I picked up my grandson from school, because my daughter was not feeling well. When he got in the car, he told me that he had won several prizes for raising the most money in his class for a pediatric heart fundraiser that his school was sponsoring. He was happy about the prizes, but his excitement was overshadowed by his worry for the children who were pictured on his fundraising papers.
His mom had been diagnosed with a rare brain
disease when he was a toddler. Since her diagnosis in 2016, she has had five
surgeries and been hospitalized seventeen times. He traveled with her to
Florida and California for brain surgeries. Nurses have been providing home
health care services to his mother off and on since he was two. His mom is not
able to do all the same things other moms do. He has fears about most things
medical. He has fears about his mom. The idea of kids his age being sick left him
feeling anxious.
I told him how proud I was of him for raising so
much money. I explained the money he raised would help researchers discover new
treatments to help the children in the pictures feel better. I then went on to
tell him that I had recently helped launch a non-profit for people who had the
same disease as his mom. I told him we were hoping to raise money for research
to find a cure for his mommy’s disease. He was quiet for a minute and then
announced that he was going to talk to his teacher about doing something at his
school to raise money for his mom’s disease.
I dropped him off that afternoon and didn’t think much more
about the conversation. Unbeknownst to my daughter and I, my grandson went to
school the next day and told his teacher about our conversation. He then
proceeded to ask her regularly about setting up a fundraising event for
moyamoya. His teacher did not dismiss his request. She researched moyamoya
disease and told him they would plan a special event in May for his mom,
because moyamoya awareness day was on May 6. Every time they turned the
calendar to a new month, my grandson would ask her how many more months
until May.
On April 28, his mom received a note from his
teacher letting my daughter know that Chris had been planning a special World
Moyamoya Day event. She asked if would reach out to me and see if I would come
to the classroom to tell his classmates about moyamoya disease and share
information about how his classmates could donate to the non-profit I was
working with, World Moyamoya Alliance.
I cleared my schedule for the day of the event,
ordered red and blue awareness bracelets, blue cupcakes and printed out a stack
of information sheets that talked about the disease and gave information about
our non-profit’s first official fundraiser. My daughter, son-in-law and I
arrived and were met by a classroom full of children dressed in blue. Chris and
his teacher were wearing matching awareness t-shirts that she had ordered as a
special surprise. The room was decorated with butterflies, a symbol of hope,
transformation and moyamoya awareness. She even bought butterfly topped bubble
favors for the entire class.
I gave a short presentation that prompted a lot
of questions. Is moyamoya contagious? How do you treat it? Why do you have to
drink water? What causes a stroke? How many people get moyamoya? Did brain
surgery hurt? Do you have seizures? What are seizures? We feasted on goldfish, cupcakes
and ice cream cups and ended the day with a bubble blowing ceremony outside.
My grandson was beaming ear to ear. My daughter and
I were struggling to hold back tears of appreciation. After six years of
sitting ringside to his mom’s hardships, this event had given him the
opportunity to do something about them.
A very special thank you to his teacher, Mrs. Davis, who could have easily said “No,” but instead took the time to research, plan and create a special event to help a little boy help his mom. If you would like to help him too, please consider making a $56 donation (or whatever you can spare) to the World Moyamoya Alliance in honor of May 6th, World Moyamoya Day. #togetherwecan make a difference for moyamoya patients and families across the world.
DONATE | World Moyamoya Alliance
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