About Emily Hope Lee

"We are confident that as you share in our sufferings, you will also share in the comfort God gives us." (2 Cor 1:7)

Hi, my name is Emily Hope and I have Spinal Muscular Atrophy (SMA), Type I. SMA is a neuromuscular disease which not only weakens the muscles that help me move, but those needed for breathing, swallowing and clearing my airway. I am not able to sit or stand and my arms are very weak, so my family helps me have fun by taking me on walks in my wheelchair and helping me play with my toys. I live with my Mommy, Daddy, big sister, and Aunt. I also have nurses that come and help take care of me. Every day they give me multiple medical treatments to keep me healthy, so I don’t have to go to the hospital. I love watching Dora and Veggie Tales, swinging, and playing with my family. They have to help me with all of that, but they enjoy it too!!

When I was diagnosed at only 5 weeks old the doctors told my parents that I would probably die before I turned two, like my older sister Linnea who died when she was only one year old. But, now I am four and half years old much older!! My parents have had to work very hard to keep me healthy, but they love me so much and do everything they can to give me the great life that I have. My doctor visits and medical equipment are very expensive, so they have a lot ot think about as they care for me.

SMA is one of the most prevalent genetic disorders:
  • One in every 6,000 babies is born with SMA. Of children diagnosed before age two, 50% will die before their second birthday.
  • SMA can strike anyone of any age, race or gender.
  • One in every 40 people carries the gene that causes SMA. The child of two carriers has a one in four chance of developing SMA.


Dettra,RN said…
Hi Emily! I miss you soooooo much. I came by to see you today and forgot about Camp Courageous Kids! I hope you had a ball! See you soon. I love you!

Miss Dettra
Anonymous said…
Hi Emily.

We really enjoyed having lunch with you this past Sunday. Hopefully, we can spend more time with you and your family so we can all get to know each other better. You are truly one courageous girl!

Albert, Hyejung, Zach and Boden
Unknown said…
Hi Emily, My Name is Linnea and I am 34yr old. I stumbled on your sister's website and was encouraged by your parent's love and faith in our LORD. Someday I will get to meet you and your sister in Heaven but in the meantime I will pray for you and your parents. Isaiah 26:3 "Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trutheth in thee."

Linnea Nicely-Dix