Meet Amber! Amber started therapy in Birth-to-3 due to swallowing and feeding issues as well as motor delays. At 4 years old, she started outpatient OT, PT and ST at Medical Support Services. When symptoms continued, Amber received the formal diagnosis of Rett’s Syndrome, a rare genetic neurological and developmental disorder, at 7 years old. Devastatingly, Amber’s parents were told she would lose her ability to walk, talk, and eat and there was nothing they could do about it. However, Amber’s mom, Paula, never lost hope and has been a strong advocate for her ever since.
“One of the most important things is carryover and follow through of therapy skills throughout her lifespan across all areas… unless you are doing it at home, it’s not going to happen”, said Paula.
Now 27, Amber has been in therapy on and off for her entire life. Amber came back to Medical Support Services to do therapy with Emily Kron, OT, in August of 2018.
“She had severe lymphedema at that time (now resolved) and is making gains every session with self-feeding, cup drinking, hand strengthening and coordination, balance, endurance, and visual motor skills. She communicates with an AAC device and walks independently, even up and down the stairs to her bedroom every day”, said Emily.
Today, Amber attends a daily work program to stay active and maintain her functional skills. She has participated in the Special Olympics Equestrian program for the last 5 years. Amber has qualified and gone to state competition every year. A few of her other passions are Easter Seals summer camps, boating, and the Brewers. You can also find her rocking out to some of her favorite music!
“Your kids are what you put into them… if you put in the time and be consistent, they will reach higher goals and success. It may take six months or more to learn a skill, but they will eventually get it. We don’t let the label define her. We try everything outside of the box and see if it works; it takes a lot of patience,” expressed Amber’s mom.
Amber’s mom is a resource and advocate for other special needs children and would like to help any caregivers that need advice or a friend for support.