Brooke Taylor was born April 6, 2019 at Winthrop University Hospital before her expected arrival. From day one Brooke has been a fighter, she entered the world at 4lbs. 13oz. She spent only eight days in the neonatal intensive care unit after being forced into this world six weeks early. Her mother, Gabrielle was hospitalized at Winthrop University Hospital for 31 days on bed rest after discovering her amniotic fluid was dangerously low. After careful consideration it was determined that this little peanut needed to be emergently delivered. In July of 2019 Brooke, who was just turning three months old, started to develop a “lacy” appearance to her skin. After a visit to the dermatologist it was determined that Brooke might have a rare genetic disorder. After second and third opinions a genetics specialist diagnosed her with Hypomelanosis of Ito. This is a rare condition characterized by distinctive skin changes in which areas of the body lack skin color. Seizures, developmental delays, and scoliosis are commonly associated with this condition. As her parents, both paramedics, began to dig deeper into this syndrome, they discovered that information was lacking. Support groups appear non-existent, minimal information is available on the internet, and there is only one Facebook group page with less than 400 members worldwide. Not knowing what else to do, they began making appointments to have testing done that the genetic specialist recommended. The first test, an ultrasound, revealed that there was a delay in the closure of her fontanelle. This is also a characteristic of the syndrome. September of 2019, which is not even half way over, had been a rough month for the Graffeo family. September 2nd Brooke was taken to Cohens Children’s Hospital at the recommendation of her pediatrician. She had been vomiting for three days and he feared she was dehydrated. While in the emergency room Brooke had four seizures, back to back, witnessed by the doctors. She was immediately admitted into the pediatric intensive care unit where she remained for the next six days. An electroencephalogram (EEG) revealed that she was having seizures every 10-20 minutes, they continued despite all of the medications that were introduced. Her neurological team is under the impression that Brooke has been having seizures since birth. After continuous trial and error with several medications she was discharged with 4 anti-seizure medications and two additional conditions, Epilepsy and Polymicrogyria. Polymicrogyria is a condition characterized by abnormal development of the brain before birth in which the brain develops with too many folds that are unusually small. Symptoms include Epilepsy, paralysis of the face, throat, and tongue, difficulty with speech and swallowing, drooling, lack of muscle coordination and impaired cognition of varying degrees and cerebral palsy. Brooke was discharged, Cohen’s was unable to provide any further assistance. After searching and speaking with multiple parents it was determined that a Epileptologist and Genetic Neurologist at StonyBrook Children’s Hospital was her best choice. In November of 2019 Brooke was sent to the ER for what appeared to be Crunching or “jackknife” movements. After being placed on another EEG, Brooke was diagnosed with Infantile Spasms. She spent the next 29 days hospitalized undergoing an intense steroid inject treatment that required a NG tube since Brooke was too weak to eat. She developed high blood pressure and the left side of her heart enlarged as a result of this intense medication. After having a week of touch and go Brooke was finally starting to get better and was discharged. Her parents contacted the Brain Development and Genetic Research Clinic at Boston Children’s Hospital. At their request, Boston received all of Brooke’s medical records. Their team of doctors began working to create a treatment plan to implement. After a week stay in February 2020 and multiple tests performed at BCH, it was in the best interest the doctors at BCH and Stonybrook worked together. BCH came up with a chemotherapy treatment plan and protocol for Stonybrook Oncology to implement. In June of 2020 Brooke began the Chemotherapy called Everolimus which is experimental. With extreme caution due to Covid-19 and an already compromised immune system her family and doctors took every action necessary to maintain Brookes health. Currently as of January 2021 Brooke has had multiple hospitalizations over 2020 and is currently home awaiting BCH direction to increase chemotherapy dosage. Brooke currently on 7 medications in total is fighting for her life everyday along with her parents. This amazing couple is overwhelmed with all the unknowns that comes with this rare diagnosis. Brooke Taylor’s fate is very much unknown, she is the ONLY person on record to have been diagnosed with her genetic mutation which has caused all 13 of her diagnosis. Her genetic mutation is a De Novo of MTOR variant c.6050 T>C p.I2017T. Both of her parents are First Responders as Paramedics and Firefighters. They have been very involved volunteering within the communities where they have lived since 2005. Brooke’s parents, Bolivar “Bo” and Gabrielle “GIGI” have given back to their community, both volunteering at there local Fire Department. Bo works several Full time as a paramedic as well as additional shifts as a Paramedic for various other Departments. Brooke’s mother, GIGI normally holds full time employment as a paramedic and also as well as additional employment various other Departments. But with Brookes medical condition she has been home for over a year now caring for Brooke Taylor to ensure she has proper medical care. Her parents work non-stop, caring for their daughter while trying to make ends meet and would do anything for her. Our goal as a family is to bring awareness to Brooke aka UnBreakableBrooke and her fight, but also to bring awareness to the special needs community as a whole and support each other.