DANSVILLE — A few months back we shared the story of Hannea Milliman, and her breakthrough surgery at Shriners Hospital in Philadelphia.
Milliman was diagnosed with a rare disease called Parsonage Turner Syndrome in 2009. After nine years she was able to get the surgery on Aug. 9. The community has been very supportive of Milliman’s journey to recovery.
Christa Milliman, Hannea’s mother, and Hannea herself shared the story with Genesee Country Express.
The road to recovery came shortly after the surgery through extensive rehab and a positive attitude. The high school junior is mostly grateful to be able to dance again, and has been back at the Dansville Dance Centre since the middle of September. She has been full swing since the start of November.
Hannea, 16, was asked to be on the Today Show in New York City in January, and will be a guest speaker and performer at Hunter’s Day of Hope and Prayer for Children on Feb. 16 at 1 p.m. at the Sports Training Center in Orchard Park.
Hunter’s Hope Foundation was established to address the acute need for information and research with respect to Krabbe Disease and related Leukodystrophies. In addition, their mission is to strive to support and encourage those afflicted and their families as they struggle to endure, adjust and cope with the demands of these fatal illnesses.
Hall of Fame Buffalo Bills quarterback Jim Kelly’s son, Hunter, passed away from this rare disease in 2005, and a foundation was established to help support others. For more information about this special event visit https://www.huntershope.org/hope-and-prayer/hunters-day-hope-prayer-children/
The Kelly family felt inspired by Hannea’s story and asked her to come be part of the Hunter’s Day of Hope and Prayer for Children.
Hannea has another surgery on her wrist that should take place in June. She is looking forward to being able to take off the braces, and use her right arm for the first time.
“I don’t think we understood how overwhelming this was going to be,” Christa said. “We didn’t know how extensive the surgery was going to be, and how long the recovery process would be.”
Hannea said she wanted to be able to use her right arm right after the surgery, and had to deal with several casts and rehab. She was placed in the Intensive Care Unit right after the surgery, since it had taken such a huge toll on her body.
The surgery itself required removing a part of her back muscle to create a bicep in her right arm, and some screws are literally holding her arm in place with her shoulder. The draining tube was taken out too soon from her back, which caused a large amount of fluid to gather.
“The worst part of the whole thing was the anesthesia,” Hannea said. “I felt really sick the whole time, and threw up after the surgery. It took them eight hours, and I think having me under that long made me sick.”
Hannea said she is very excited to be able to have her right arm in place, but it will take a long time to process.
“They took photos of the process, and when I saw what was done it didn’t even look like me. I am still trying to process that I had the surgery,” she said. “I was determined to get through rehab, and be able to do what I love the most again. I couldn’t wait to get back to dancing.”
Hannea didn’t want to be hooked on any pain medication, so she started using Tylenol instead shortly after the surgery.
“I wanted to go back to school, because I didn’t want to fall far behind. Everyone at school has been very supportive of me,” she said. “I was so excited to be part of Homecoming Court, and I found that out when I was still in the hospital.”
Christa said that the entire community has been amazing to her daughter, and she is very grateful or all of the support.
“Everyone at the Shriner Hospital has became like a second family to us, and we are so grateful to them for all they do for Hannea,” Christa said. “Her doctor always had such a great sense of humor, and was able to put Hannea at ease. Hannea had an instant bond with all the nurses, and they gave her a card for her birthday.”
Hannea said that once out of surgery her right arm began twitching, and it would seem she wanted to get onto the journey of healing.
Of her chance to share her story with Hunter’s Day of Hope and Prayer for Children and Today Show, she is excited.
“I really want to share my story, and I hope to inspire others who may be going through a rare disease,” Hannea said. “My story has been inspiring to a lot of people. I am more than happy to get my story out there. I want to pay it forward.”
Hannea had recently performed in The Nutcracker in Mount Morris, and is on the Dansville Central Honor Roll. She is a member of the National Honor Society, and Vice-President of the Class of 2020. Nothing about her disease has slowed her down when it comes to her dreams.
“People have come up to me and told me what a powerful impact my story has made on their lives,” Hannea said. “I am glad they are getting hope from my story. I want them to do what they love, and follow through with their dreams.”
The Milliman Family leaves for Shriner Hospital again on a follow-up on Dec. 26, and while there they plan on going to New York City to see The Rockettes, Central Park, and Rockefeller Center. Hannea plans on pursuing a career that helps disabled children, and wants to keep doing her love for dance. She plans on going to New York University or Nazareth College.
“I feel anxiety still that the screws in my arm will come loose, and that is what is holding my arm and shoulder together,” Hannea said. “It is unnerving when your entire arm is being held together with screws. It is very scary, because I don’t know what will happen.”
“I have come such a long way, and I don’t want to lose any movement in my arm,” Hannea continued. “I worked so hard for this, so I want to be able to heal. It does feel good to be able to do what I can with it now. I never imagined in my lifetime that I would get this surgery, and have my arm again.”
Hannea will share her story with about 3,000 people at the Hunter’s Day of Hope and Prayer for Children. She will share it with the world on the Today Show. Hannea plans on writing her own story soon, so she can reach as many people as she can.
“Hannea’s story has humbled me,” Christa said. “I am starting to appreciate the little things in life. It has been intense as her mother to see her go through this. Everyone who has been there for her has gone above and beyond. This is Hannea’s body, and it is her story to share if she wants too. I always tell people it is her choice to share her story.”