SALT LAKE CITY — On March 28, 2012, Stefani Ellison of Cedar City traveled to China to bring home a sweet 6-year-old girl who had spent all of her life in an orphanage.
The Ellisons named their new daughter Meisyn, meaning "courage and hope of the soul, resilience, compassion and love." They wouldn't know until later what a fitting name it really was.
A special family
The experience of adoption was not a new one for the Ellisons, as they had already adopted 11 children — six from China, four born in the Marshall Islands and one from the local Paiute Indian Tribe. Not only has each of their adopted children come from other countries and/or backgrounds, they also all have special needs.
Most of the older Eillison children have had their disabilities medically repaired, but there are two children with osteogenesis imperfecta (brittle bone disease). One of which was adopted last year at the age of 12 and cannot walk or stand or straighten herself.
They also have a daughter who was born with tibial hemimelia and had her right foot amputated when she was 7 years old; she currently wears a prosthetic leg. And another child has severe epilepsy, which resulted in a brain injury. He is now 10 but has the cognitive level of a 3-year-old.
Even with all of these challenges, the Ellisons knew that there were still other children who needed to be “brought home.”
Bringing Meisyn home
When Stefani Ellison made the trip to pick up Meisyn, she was aware that there were special needs, but the extent of her medical condition was unknown. Stefani said Meisyn's condition was thought to be an orthopedic issue including severe rickets with bilateral dislocated hips. However, upon picking her up, she knew something was “seriously and profoundly 'wrong.’ ”
What is spinal muscular atrophy?
Spinal muscular atrophy, or SMA, is an inherited condition that causes nerve cells in the lower part of the brain and spinal cord to break down and die. When this happens, the brain stops sending signals to the body's muscles. ...
Much research has been done to identify the genes that cause SMA, but currently, there's still no cure for the disease. Despite the limitations SMA causes, many kids who have it learn to live as independently as possible with the help of physical and occupational therapy and by getting treatment for the disease's most troubling symptoms.
On a blog set up for Meisyn, Stefani said, “After multiple MRI's, possible diagnoses and specialized tests, it is our understanding that Meisyn has a very rare and degenerative form of spinal muscular atrophy (SMA) which is part of the muscular dystrophy family. In her case, her nerves are degenerating. The nerves can no longer carry instructions from the brain to the muscles, thus the muscles atrophy.”
Due to her condition, Meisyn has never been able to walk and even has a difficult time sitting up on her own. In recent weeks, it has been clear that her condition is worsening and that her nerves are dying. Meisyn is dying.
As painful as her condition is and as extremely difficult things are, Meisyn has risen above it all. Her kind and gentile nature and positive outlook on this life and the next has been an example to so many.
According to Stefani, Meisyn knows that her life here on earth may not be much longer.
Messages from Meisyn
It has been through notes and pictures — “messages” — that Meisyn has chosen to communicate with others. Just as any 7-year-old girl, she sees herself as a beautiful princess, which she has depicted in many of her drawings. And just like any other 7-year-old girl, she has dreams and wishes — many of which she probably will not have the chance to realize.
In a note titled, “Meisyn's Sand Bucket List,” she wrote down several of the things she would like to do in this life. The list includes the following items:
- Go to Auntie Kim's house
- Go to Disneyland
- I want to meet of Rapunzel
- I love to get sparkly ring
- I love found shells at beach
- I love have princess party (she drew a picture of beds, meaning a slumber party)
- Buy my own iPod
- Pet a hamster (I think she means have a hamster for a pet)
- Purple sparkle nails
- I love to get purple flowers (Operation Purple Blossom is underway in the Ellison garden)
- Help zoo animals
- Fly with fairies
- To love
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