Emerson is 6 years old and loves to be outside enjoying what the world has to offer. She loves to splash in pools, ride on boats with her friends, and float on rafts. She loves to play challenger baseball with her best friends Cheyanne, Charlotte and Noel. Playing dolls with her sister and also hide and seek are right up on top of the list of favorites. Emerson has attended Asbury Child Development Center for the last 3 years up until just days before her most recent brain surgeries.
After what has seemed like the longest year of our lives with testing and trying new medications to help Emme with her Epilepsy, meeting the best of the best neurologist, neurosurgeons from north to south, east to west and unanimous agreement from everyone, the very best option for Emerson was to start the Journey towards a right functional hemispherectomy. Hemispherectomy is a neurosurgical procedure in which a cerebral hemisphere is removed or disconnected that is used to treat a variety of refractory or drug-resistant seizure disorders. During this surgery she also had her shunt removed and a drain placed into her brain to help control the hydrocephalus. The right side of Emerson’s brain was disconnected with a portion removed; she then underwent a 7th brain surgery to have her VP shunt placed into her right “unattached” brain. We were told to expect anywhere from 6-12 more brain surgeries during the first 5 months after the hemispherectomy.
Surgery was March 23, 2023 and April 3, 2023.
This surgery required her to be in PICU for 2 weeks at Hopkins and then an additional three to four months in an intensive rehabilitation program at Kennedy Krieger Institute in hopes that Emerson will gain all of her abilities back.
We are currently living at the KKI Inpatient rehabilitation unit and at the Believe in Tomorrow Children’s House then when Emerson is sent to outpatient rehab we will both hopefully be living there since the drive would be too much for us to do daily. Her father and twin sister are living in Princess Anne trying to carry on as normal as possible visiting on the weekends when able.
Emersons life started off Rare. She was born at 25.3 weeks gestation and with a twin sister. Not very many medical professionals thought her and her sister would make it more than a few hours being born so early but they were determined to make their mark on the world.
When she was two days old the neonatologist told us that she had suffered a very large brain bleed and that Emerson would most likely not ever walk or TALK! We never once gave up hope for her, or for her twin sister.
She has been diagnosed with Hydrocephalus, Cerebral Palsy and Epilepsy. She has now had 7 brain surgeries and 1 eye surgery. They both spent the first 106 days of my life in the NICU at Johns Hopkins.” – Charissa Thomas
Since Emerson was born her spirit and determination has been unbreakable. After being born alongside her twin sister at 25 weeks, she was diagnosed with Hydrocephalus, Cerebral Palsy, and Epilepsy. In addition to spending the first 106 days of her life in the NICU as a result of being born extremely early, she has currently undergone 7 brain surgeries with the expectation of needing between 6-12 additional brain surgeries within the next few months.
Her diagnosis does not define Emerson, nor does she let it dull her sparkle. Emme loves to play baseball, play with dolls, splash in pools, ride on boats and float on rafts. Hide and seek is another favorite, but good luck finding her!
The Thomas family has been through an extraordinary amount over the last six years. Dividing their time between two cities and two twin girls. We are asking anyone who can help to please do so. We need sponsors, we need anglers, we need volunteers, we need items for raffles and auctions.
Every little bit helps!