The Lyons siblings of Amherst are what you call superkids. While many children their age are enjoying school and playing, the “LyonsCubs” have been through more than most adults their age and they stick through it together.
Carley, 8, Greyson, 7, and Landon, 4, suffer from Chiari Malformation and Ehlers Danlos Syndrome. What started out at seizures that they thought could be controlled by medications turned into a medical nightmare. Between the three of them, they’ve had seven brain surgeries, 25 other surgeries/procedures and over 30 scans. Their mother, Lisa Lyons, who also has two other children, (Hailey, 12, and Jaxson, 2) is their caregiver full-time. Her daughter, Carley, was just in the hospital again two weeks ago, a routine the Lyons Family is sadly very family with.
“We spent the majority of 2013 to 2015 in Women and Children’s Hospital between Carley, Greyson and Landon. Having five children has been a blessing, but having three who are very medically complex is exhausting. I am not just their mother, I am their nurse, their voice, and the jack of all trades at home,” she said.
But although this is a lot to handle for one person, Lisa Lyons says she wouldn’t change her duty at all because it has made her bond with her children stronger than ever. Her goal is to continue to raise awareness of this condition as there is no cure and any surgery has limited results that might not even help.
“My children’s battles with Chiari Malformation, epilepsy, Ehlers Danlos Syndrome, Pots, chronic fatigue, migraines, hydrocephalus, severe apnea and auto immune issues is far from over. We are constantly learning, raising awareness and pushing through the pain,” said Lyons.
The Lyons recently participated in the Conquer Chiari Walk Saturday at Ellicott Creek Park Tonawanda to raise awareness for all families suffering with this condition. If you would like to make a donation to help this family, visit www.gofundme.com/courage4Lyonscubs
You can also follow their journey here: www.facebook.com/courage4lyonscubs/